The importance of finding the RIGHT doctor for you

Yesterday I spent seven hours in the car travelling to and from the Royal National Orthopaedic Hospital in Stanmore.  14 months after being referred to see Dr Cohen I finally got the opportunity to meet her, and I'm very glad I did.

I was a little apprehensive, especially considering my last appointment with her colleague, Dr Mittal (see A pointless trip to RNOH Bolsover Street) but this trip was definitely worthwhile!

Dr Cohen was awesome.  She's down to earth, approachable, very experienced in her field and keen to help. I came prepared with six pages of notes and copies of various letters and blood tests that I've had done locally.  She patiently listened to all of my concerns and offered constructive suggestions, helpful advice and a plan of action.

Dr Cohen agreed that an intensive rehab programme is not suitable for me at the moment.  I need to address some more immediate issues such as the pain in my head and neck.  She recommended that I see a community physio at home for an assessment and to learn some exercises that might help me.  She also recommended getting a Theracane, which in her words looks like a martial arts weapon!

We talked about my muscles and she said they are irritable and excitable.  I showed her the myotonia in my hands and she though the neurologist used the term to describe what was happening, rather than to diagnose a myotonic disorder but she agreed that it's worth seeing Prof Hanna's team at the channelopathy clinic just to put a line under it.

She gave me advice on sitting in good posture, it's hurting my sit bones so she suggested using a seat with more padding so I'm thinking about recovering my computer chair and padding it out with a little memory foam.

We discussed all my stomach and bowel problems and she's going to ask my GP to refer me to an EDS savvy gastroenterologist.  She also wants me to be assessed by an OT for compression gloves.  We discussed pain medication and she suggested a few options from low dose pregabalin, low dose pain patches and duloxetine.  It's all about balancing the benefit and the side effects.  I'm not keen on pregabalin and duloxetine as I've read too many horror stories about withdrawal and I've had bad experiences with gabapentin and prozac so I might give those a miss.

We talked about me using elastic ankle supports when I sprain my ankle, getting Dr Marten boots for ankle support when walking (not that I do much of that), finding a relaxation technique that works for me, FODMAP diets and loads of other things.

It was a really positive appointment.  Dr Cohen is going to write everything up in a letter to my GP and she'll send me a copy to as my GP surgery is very good at losing important letters.

I'm very grateful to Dr Sobey at the EDS Service in Sheffield for recommending Dr Cohen.  I only wish I'd seen her first instead of Dr Mittal because I might have avoided the physical and mental stress of pushing myself through rehab.  I was so upset when it didn't work, I blamed myself even though I gave it 100%, and I was  and even more upset when Dr Mittal refused to help me because "the only treatment is rehab".  I'm glad that Dr Cohen gave me other options to consider.

I've seen a lot of doctors in the past 24 years and only now am I learning the importance of finding the right ones.  One good doctor is better than 20 bad ones and even though I am suffering today after the 300 mile round trip to Stanmore it was worth it.

Thank you Dr Cohen!

Indoor pot holes, mobility scooters and the public perception of disability

I've read a lot about disabled people being dicriminated in the press.  If you use a mobility aid or claim disability benefits then you're obviously a faking scrounger who is too lazy to go to work.  I considered myself lucky, I'd never had any kind of comments like that made about me until I had a minor accident in my local Post Office

On Thursday 24th October I went into Worksop town centre with my personal assistant and two of my children.  I visited the Post Office on Newcastle Avenue.  Even though it's the main post office in Worksop it is actually a sub post office, a privately owned business contracted to do Post Office Ltd. business.

When I entered the shop I was surprised to find it in a state of disrepair.  Several floor tiles were smashed, with fragments of tile on the floor.  It looked dirty and untidy but I didn't expect what happened next.

I drove my three wheel mobility scooter across a rug on the floor when my scooter suddenly lurched forward and jolted to a halt.  I was stuck in a hole in the floor!  I eventually managed to reverse out of the hole and my PA lifted the rug to find a significant hole in the floor.  The tile was completely smashed the concrete underneath was crumbling away and there was gaping hole in the floor!  I was lucky not to be injured.

Thankfully my scooter was not damaged so I queued up at the counter, bought my stamps and asked the clerk if I could make a complaint about the floor.  She didn't seem that concerned and took my name and address to pass on to the owner.

I was concerned that someone might injure themselves falling in the hole, so when I got home I telephoned the Post Office customer services.  They basically told me the Newcastle Avenue branch was a privately own sub post office and not their responsibility.

They didn't seem keen to take any action about the hole so I telephoned the local newspaper, The Worksop Guardian.  I told my story to a reporter and I emailed him the photographs I'd taken on my phone.  Later that day the story was published on the Worksop Guardian website:

Woman on mobility scooter falls down hole in Post Office on Newcastle Avenue

Local newspapers are infamous for getting the facts wrong but I think they did my story justice, and they even spelled my name right.  I was pleased with the final paragraph about how the Post Office was now dealing with the problem.  That was the reason I went to the press, to get some action and to stop anyone else falling in the hole.

I thought I'd done my civic duty.  I thought I'd done the right thing.  I guess I was naive because I didn't expect the all discriminatory posts made by trolls on the Worksop Guardian Facebook page.  Here are a few of the comments:

The story about a hole in the Post Office floor had turned into an attack mobility scooter users and my motives for reporting the hole!

I was offended by the insinuations that I did it for compensation.  The thought never crossed my mind. I was not injured, my scooter was not damaged, I just wanted to warn people about a potentially dangerous hole in the floor that had been hidden under a rug.  Was that wrong?

I was disappointed by the attitude towards mobility scooter users.  When did it become acceptable to publicly question people's disabilities?  I appreciate it can be confusing for people when they see a disabled person walk a short distance and then get on a scooter.  They might jump to the conclusion they are lazy or even faking a disability, but the truth is that you don't have to be paralysed to use a scooter or wheelchair.

There are many conditions that cause significant pain and fatigue to walk more than a few yards, but it is also important to maintain fitness and mobility to stay healthy.  I walk as much as I can.  There are days when I can walk short distances and there are days when I cannot stand at all.  There are days I can get around on my mobility scooter and days when I am so ill I need to be pushed in a manual wheelchair.

I am not faking it.  I am not lazy.  I am struggling with several chronic health problems that make it difficult for me to stand and walk.  I struggle with pain and exhaustion every day and I am very disappointed that the general public see me and my scooter in such a poor light.  I wish I could educate these people on what me and other disabled people go through every day.

I shared my feelings on Facebook.  A good friend of mine reminded me, "Local paper comments are where trainee trolls go before they get a bridge to live under."

Always remember kids, don't feed the troll!

Managing POTS

Since being diagnosed with POTS I've been trying out all kinds of things to manage my symptoms.  Here are some of the things that have helped me.

This is not intended as medical advice.  Please consult your doctor before trying anything new.

DRINK! 

I always feel worse when I'm dehydrated so I try and drink 2-3 litres of fluids a day.  I drink bottled water as I don't like the taste of our tap water and I also use High5 Zero tablets.  It's an electrolyte tablet that you add to water to make a refreshing drink.  Berry is my favourite flavour. It contains sodium, magneisum and potassium, and has no artificial colours, flavours or preservatives.  It does contain artificial sweeteners (sorbitol and sucralose).

You simply drop one tablet into a 500ml water bottle and let it disolve.  It's takes a couple of minutes.  The taste is quite pleasant, like weak blackcurrant squash.

You can buy them from various sports websites online.  Shop around for the best deals.  They cost around £4 for 20 servings, that's just 20p per drink.

Discount Supplements

Wiggle

Chain Reaction Cycles

There are other products on the market, such as Nuun tablets, but they contain artificial preservatives and sweetener and I personally didn't like the taste.

I have been advised it is possible to drink too much, which is not good for you.  Too much plain water can leave your electrolyte levels low so it's probably best not to exceed 2-3 litres a day.  A good indication of your hydration is the colour of your urine.  Pale yellow is good, clear means you've drunk too much.

COMPRESSION!

My GP prescribed thigh high compression stockings on the NHS but they were a disaster.  The pharmacy assistant had never measured anyone for stockings before and she didn't quite get the size right as they were so tight on my thighs they rolled right down and cut off my circulation.  The fabric was a rough, itchy nylon and I couldn't stand the feel of it against my skin so I ditched them and tried something else.

I regularly wear bamboo knee high compression socks from a website called Butik21.  They are soft, machine washable and just look like ordinary socks.  When I wear dresses I wear ordinary support tights from Matalan which are a bargain at only £3 a pair.  They don't give the strong compression my POTS nurse recommended but they do make a difference.

I did try 20-30 mmHg compression tights but they were expensive and so difficult to put on that I put my finger through the fabric trying to pull them up!  I have since learned that wearing disposable rubber gloves helps a lot when trying to get tights on as they grip the fabric far better than fingers and you have less chance of snagging them on a fingernail.

In the summer when I want to wear sandals with trousers or maxi dresses I wear open toe knee high stockings from Pebble UK  They are great with flip flops and they stop your toes getting too sweaty when the weather is warm.

My POTS nurse also mentioned shapewear as a possible compression option.  I find that control pants are useful (and improve my figure) but the high waisted ones make my reflux worse.  I have read that abdominal binders are commonly used by POTS patients, especially in the USA, but again if they are too tight or too high it can cause problems if you have reflux.




SALT!

I never used to put salt on anything but that was before I was diagnosed with low blood pressure.  There are various recommendations about how much salt you should have.  I liberally put it on everything now.  I don't measure it I just add it to my food, as much as I can stand.  I have recently been using pink Himalayan salt.  I don't know if it's any better than regular white salt but it is a pretty colour :)

Salt doesn't help everyone and you should check with your doctor before increasing your salt intake.

AVOIDANCE!

It might seem obvious but avoiding things that make my POTS worse is a good thing to do.  Alcohol makes me feel a whole lot worse, as does standing still (ever get the feeling you're sinking into the floor?  Yup!  Me too!) Getting too hot makes me feel worse so when we do get a glimpse of summer I'll be the one hiding indoors with the curtains drawn.  Stress is another trigger but it's not always possible to avoid stressful situations but cutting out the drama wherever possible helps.

Chronic Pain and the "F" word

When you have suffered pain for more than three to six months it gets labelled as chronic pain.  EDS patients have often suffered a lifetime of pain so this label is easily applied to them.  The question is, it is helpful?  From personal experience I don't think it is.

Medical professionals have their own and sometimes differing understanding of chronic pain.  Most assume it has no physical cause because it if were caused by an injury it would have healed by three to six months.  This is a reasonable assumption but EDS patients are awkward and don't follow the rule book.

For example if a normal person sprains their ankle it should feel better in a few weeks with appropriate treatment (rest, ice, anti-inflammatory medication).  If they are still suffering pain after six months then the doctors assume it is "chronic pain" and explain it by using analogies about faulty pain signals or pain gates being left open.  They encourage exercise, physiotherapy and continuing normal activities.  They might prescribe medications like gabapentin and pregabalin for nerve pain.  This might help some people with chronic pain but my experience as an EDS patient is different.

I frequently sprain my ankle.  It doesn't take a forceful injury for me to have a sprain .  My ankle is hypermobile, the ligaments are too stretchy and I can go over on my foot just turning around in my kitchen.  I go through the normal healing process but six months later it still hurts.  Why?  Because my ligaments are stretchy and every time I turn around I keep spraining my ankle again and again. 

I don't have chronic pain that continues after a single sprain, I am repeatedly spraining my ankle so it never gets to heal properly.  I also get more pain due to muscle spasms as the muscles are overworked trying to do the job of the dodgy ligaments.

 

The confusing thing for medical professionals is that some EDS patients don't swell up when they have an injury.  I'm not sure if we know why, it could be due to the reduced number of receptors in joints or because we damage our ligaments rather than our tendons and muscles.  If I had a pound for ever time a doctor told me there's nothing wrong because it's not swollen, then I'd be rich!  It's much easier and convenient for them to diagnosed you with chronic pain and blame you if the treatment for chronic pain doesn't work than take the time to figure out what is really going on.

It's not a great situation for an EDS patient to be in because ignoring the pain and pushing yourself to exercise can sometimes make things worse.  What we need is proper understanding of the injury and appropriate treatment.  In the case of my ankle I might benefit from taping to stop myself hyperextending it, or strengthening exercises so my muscles can help stabilise my joint without taking on the entire load of the ligament when it is sprained.  Getting that kind of help is next to impossible unless you live in London and have access to one of the few expert physios in the country.

There is also the "F" word.  I'm not cursing, I'm talking about fibromyalgia.  Many EDS patients are diagnosed (rightly or wrongly) with fibromyalgia.  It's a diagnosis of exclusion based on a symptom list including all over pain, pain on light touch, depression, insomnia and a series of tender points.

 

I'm sure there are some people who have true fibromyalgia but it can also be a bucket diagnosis used doctors who are baffled by the patient but can't think of what else to call their symptoms.  Unfortunately this "F" word can cause a lot of trouble if your underlying problem is EDS because people with fibromyalgia are reassured that their pain is not caused by an ongoing medical problem or injury and they are encouraged to do aerobic exercise as the endorphins will reduce their pain.  It's not so great for people with EDS and can leave them with serious injuries.

EDS patients can appear to have fibromyalgia because they can have trigger points, which rather confusingly are in similar places to the tender points used to diagnose fibromyalgia.  They both hurt if you press on them but they are quite different things. Trigger points can be knots or lumps in muscle which form following microtrauma, such as the overuse of a muscle taking on the load of a ligament in the hypermobile joint of an EDS patient. It's easy to understand why tender points and trigger points can get confused!

Another treatment for fibromyalgia is gabapentin or pregabalin.  I know some people find them helpful but others, like me, do not.  They can have unpleasant side effects (gabapentin turned me into a drooling zombie!) but as with all strong painkillers they can also mask the warning signs of injury.

I had a conversation about pain killers with a physiotherapist.  They recommended stronger pain relief but I explained when I tried it I ended up feeling worse.  I am in pain every day and my pain killers relieve that pain a little bit so that it doesn't prevent me from doing some activities.  When I feel my pain increasing to a level that I cannot tolerate then I know I've done too much.  If I take strong painkillers they mask the pain, I am not aware of the warning signs and I push on regardless.  Then when the painkillers wear off I am in more pain than when I took them.  The physio said if I am pushing myself to the point of pain then I am doing too much.  I should stop before I feel pain, but that is difficult to do when every movement causes some kind of pain. 

For me it's not about pain gates, anxiety or fear of movement, it's a case of my body is literally falling apart and it hurts trying to keep everything together.  My joints are hypermobile and  nearly 40 years of using them the wrong way has taken its toll.  I don't need to be told my pain isn't real, I need expert advice on how to move properly and limit my injuries, then maybe my pain won't be so bad.  Unfortunately there are very few EDS experts and the NHS doesn't allow for this kind of long term treatment.  Until things change EDS patients are going to be labelled with chronic pain and the "F" word and suffer at the hands of ignorant doctors and physiotherapists. 

I'm not saying that all exercise is bad but it has to be personally tailored to the individual needs.  I have been told I should try tai chi.  I'd love to give it a go but I can't stand unaided and raising my arms increases my POTS symptoms so unless the aim of the exercise is to make me fall over then it's not going to be a great option for me. 

EDS patients are tricky, it's a battle just getting the right diagnosis but I hope that in the future that doctors will learn to appreciate how we are different and how important the right treatment is for us.

Discharged!

I've held off writing this post until I'd calmed down about it.  I've tried not to get upset but I am very protective of my family and I cant abide people telling lies.

A week ago I received a letter from Dr Mittal, my consultant at RNOH Stanmore. It was quite short and basically said my last consultation with her could not be completed due to my partner's rude and aggressive mannerisms and shouting in clinic.

WTF!

She said she offered to transfer me to Dr Cohen's care but I already told her I had an appointment so she has discharged me.

I'm not going to waste my time listing everything that was wrong in her letter but I couldn't let it go, especially as she sent a copy to everyone on the rehab team and Dr Cohen.

I wrote a dozen angry letters back, just to get my frustration out of my system, but they were all too long and ranty so I wrote a short reply putting forward my version of events and asking her to retract her statement about my partner or at the very least put my letter on file.

It cost a bomb in stamps but I didn't have much choice unless I wanted the whole staff at RNOH thinking my partner is a rude and aggressive thug who has nothing better to do than shout at doctors.  I know Dr Mittal won't like it but there are two sides to every story.

I have since been told that my appointment with Dr Cohen has been cancelled because it was made in error.  I have been referred as a new patient and I am bqck on the waiting list.  Hopefully she will be able to see me sometime next year, as long as Dr Mittal's letter hasn't scared her off!

A pointless trip to RNOH Bolsover Street

I am still so angry right now, mostly because I knew it would be a waste of time but I also knew I had no other option. Frustration doesn't even come close to describe my emotions.

After my failed attempted at the Royal National Orthopaedic Hospital's Ehlers Danlos Rehabilitation Programme and subsequent feedback to the team, a follow up appointment was made for me to see my consultant, Dr Mittal, at 10:30 on Monday 4th August 2014 at their clinic on Bolsover Street in London.

To be honest I had my reservations.  Dr Mittal was quite nice last time I saw her but she wasn't that helpful.  She also misdiagnosed me with carpal tunnel and prescribed wrist braces that I didn't need, but that's another matter

After checking the price of train fares I telephoned Dr Mittal's secretary to see if there were any later appointments so I could catch a cheaper train.  I was told I was the last one in clinic but it didn't matter if I was a little late as Dr Mittal would still be around to see me.  I told the secretary I would try my best to be on time.

Ten days before my appointment the secretary telephoned be to confirm what time my train would be arriving. I told her the train got into Kings Cross at 10:05 so I should be on time for my 10:30 appointment.  Sorted

No.

I arrived at the hospital reception desk at 10:25.  The nurse called me through and told me I was early, my appointment wasn't until 14:00.

What?

They had changed my appointment time and not told me.  This was not good.  I had already booked non-refundable train tickets for 13:48 out of Kings Cross.  The nurse checked with the doctor and said they would fit me in at the end of clinic.  Phew!

I sat and waited but I was still rather cross.  I got in to see Dr Mittal earlier than I expected to.  She asked me what did I want to see her for.  Erm, the appointment was made for her to see me.

I started out trying to explain how the rehabilitation course was not helpful for me because my existing medical conditions prevented me from fully participating and the physical demands of the course made me worse. She didn't seem the slightest bit interested.

I tried to talk to her about the head and neck pain I've been suffering from. My GP and the pain management doctor both told me to talk to my EDS consultant about it.  She refused to talk about it because she only deals with EDS.

WHAT?

I mentioned my autoimmune problems and how I'd recently been diagnosed with Sicca/Sjogren's.  She didn't want to know.  She only deals with EDS.  I told her the reason Dr Sobey from the EDS Service referred me to see Dr Cohen at the RNOH was to determine if I had EDS, an autoimmune condition, or both.  Dr Mittal told me again she only deals with EDS, this is an EDS clinic.  I didn't find this particularly helpful so I asked who could help me. She said a local rheumatologist.

*sigh*

I told her I've seen FIVE local rhematologists, they ALL missed my hypermobility and discharged me with no treatment and a vague diagnosis of CFS or Fibromyalgia.  I needed to see someone who was experienced in EDS and autoimmune conditions.  She said this was an EDS clinic and she only dealt with EDS.

Frustrated by this, but knowing it was a futile argument, I moved on.  I asked her about the myotonia in my hands. A local neurologist said it was a rare complication of EDS, which she should be able to deal with because she only does EDS, right?

WRONG!

Dr Mittal said I needed to speak to the rehabilitation team about that.

*headdesk*

I told Dr Mittal that I already had spoken to the rehab team about it.  They said talk her HER about it because, and they made this very clear from the very beginning of the rehab assessment meeting, THEY DON'T TREAT OR DIAGNOSE MEDICAL CONDITIONS.  Dr Mittal just said "absolutely".

So....?

I asked her if there were any treatments for myotonia.  She said there are no treatments for EDS, only rehabilitation.  That's not what I asked but I wasn't going to get any other answer from her today.

She only dealt with EDS and the only treatment is rehab.
She only dealt with EDS and the only treatment is rehab.
She only dealt with EDS and the only treatment is rehab.

I was getting a bit frustrated by this point.  I had a whole list of things I wanted to discuss with her that were directly related to EDS.  I took the list out of my bag and she dismissed everything on it.  She wouldn't talk to me about my head and neck pain (which is possibly EDS related), I need to see someone local about autoimmune, even though the local doctors can't help me because I'm too complicated, and the only treatment for EDS is rehabilitation.  I reminded her that the rehab didn't help me and she shrugged and said it doesn't help everyone.

I told her again, the reason I was there was to see an experienced doctor to figure out my complex health problems.  My husband was getting equally frustrated.  He asked if she had my original referral letter.  She ignored him.  He asked again, a little louder.  She ignored him.  He asked again, almost raising his voice.  This got her attention.

She told us there are acceptable levels of behaviour.  It took me a moment to realise what she was talking about.  She thought we were being aggressive towards her and she said she didn't have to see me if we behaved like this.

:O

She was the one being rude and not answering questions!

I got rather upset and said it was disgraceful that she refused to discuss anything with me.  I was so pissed off and angry that our journey had been a complete waste of time.  I appreciate she may not have been able to help me with all of my questions but she made no attempt to listen to me and no attempt to find the appropriate medical care for me.  All she bloody said was "I only deal with EDS and the only treatment is rehab," which is, in truth, absolute bollocks, but I refrained from telling her that because unlike her, I'm not that rude!

I was in a bit of a state in the waiting room, I asked the nurse who sat in during the appointment if our behaviour had been unacceptable and she said she wasn't allowed to say.  I spoke to the nurse on the desk and she gave me a feedback form and found the telephone number for RNOH PALS so I could make a formal complaint.

I know doctors don't have all the answers.  I know there is no magic cure for EDS but there are plenty things I can do to help improve my quality of life.  Rehab was not right for me at this time and in hindsight Dr Mittal should have known this, she even wrote in her letter to my GP that exercise makes my symptoms worse.  How did she expect me to cope with rehab then?  That's the problem.  I don't think she thinks at all.  She was brought in to ease the case load from Dr Cohen but she seems to be able to do little more than recognise the symptoms of EDS and make referrals for rehabilitation.

PALS telephoned me this morning, they are going to make an informal investigation, talk to the team and to Dr Cohen and see if they might be able to bring my appointment to see Dr Cohen forwards.  The 18 week NHS waiting time seems to be a fairytale when it comes to RNOH.  I was referred to Dr Cohen in August 2013 and I am currently due to see her in March 2015, which is a mere 19 months wait...

It's a good job I'm not ill or anything...oh... wait....   Yes I am ill, I am in pain and my condition is deteriorating.

I must look on the bright side.  At least I didn't have to pay for the consultation.  It only cost me £116 in train fares, one day off work for my husband to take me and push my wheelchair around London (I'm housebound without assistance) and the kind services of my parents who looked after my three children for the day.

I'll keep you posted.

Untouchable

For years I suffered under the diagnosis of ME.  I was 15 years old when I was diagnosed, there were no treatments and I was expected to get better.  I didn't get better.

Over the years I suffered flare ups of pain an ill health.  I saw many doctors who were unable to help me.  No-one knew what ME was or how to treat it.  I'd tried low dose antidepressants but they just made my symptoms worse.  I saw psychologist but I had no depression or behavioural problems that would explain my symptoms.  There was nothing I could do but I didn't give up

After years of research I discovered my symptoms fitted Joint Hypermobility Syndrome, Ehlers Danlos Syndrome and POTS and after more years ofbatting with doctors who were reulctant to consider anything other than my ME diagnosis I finally got diagnosed with JHS, EDS and POTS.

Finally I had the right diagnosis I had hope that there would be treatments to help me.  I was wrong. Suddenly I had become untouchable.  My conditions were so rare that I knew more about them than the doctors I was consulting, they were not aware of some of the most basic symptoms and complications so they backed away like I had something horribly contagious.

I saw a local physio who barely even examined me.  She told me to stretch and do basic fitness exercises.  She encouraged me to do Tai Chi, which wasn't the best advice to give someone with POTS considering I can't stand unaided, I collapse when I do stand and raising my arms above my head makes the symptoms ten times worse!  I was discharged because there was nothing they could do for me.  Nada.  Zilch.

I was told to try Pilates and paid for private lessons but they caused me more pain and I was able to do less as a result of the increase in symptoms.  One worrying symptom was the severe pain in my head and neck that is brought on by any kind of movement or stress.

I saw a neurologist to rule out Chiari malformation as it may have explained some of my symptoms and it is more common in people with EDS. The doctor was doubtful that I had it and explained even if I had they wouldn't do anything about it as the surgery to treat it could make me worse.  I was given a laying down MRI to rule it out (even though an upright MRI is required to fully discount it) and was told everything was normal.  I was discharged, no closer to finding out what was causing my pain.  I did learn that I have myotonia in my hands.  If I grip something very hard for more than a few seconds I can't relax my fingers.  The neurologist said it was a rare complication of EDS but gave no other information or advice on how to treat it.

I've had the pain in my head and neck for 14 months now.  It affects me every single day and the only thing that helps is diazepam, which is not an ideal long term solution to the problem.  The pain gets worse when I move my head, raise my arms to lift a plate from the cupboard, turn to look over my shoulder when crossing the road, even sleeping can trigger it.  I went back to my GP and she wondered if it could be occipital neuralgia. She sent me to a pain clinic with a view to having injections to ease the pain.

I waited a month for the clinic appointment but unfortunately it was another disappointment.  I was discharged in less than 30 minutes.  Apparently my pain is not consistent with neuralgia and the treatments are not suitable for me.  I was offered injections of steroids and a local anaesthetic - my old friend lidocaine.  I had to explain to the doctor that lidocaine doesn't work in EDS patients.  The doctor had never heard about it before so I showed him my Stickman Communications card  He said he wouldn't inject me, especially considering the reaction I had to lidocaine when the ignorant ENT sprayed it up my nose.

The other option was acupunture.  I've had it before and it can be quite relaxing so I said yes and asked if he had any gold needles.  I have a nickel allergy and the last time I had acupuncture I broke out in itchy red dots where the needles had been.  He said no, he only had the stainless steel needles which contained nickel.  There was nothing else he could do for me so I was discharged.  The doctor was apologetic but seemed pleased to see the back of me.  I have become too difficult.  Untouchable.

I have the right diagnosis but I can't find anyone who even wants to help me, never mind is actually capable and knowledgable enough to help me.  I've exhausted NHS options so that leaves me with having to do my own research and pay for my own private treatments.

C'est la vie!

I won the battle with Social Services! Woo hoo!

I'm still in shock.  I've just had a call from the nice lady at Nottinghamshire County Council complaints department.  The manager has agreed to me having a Direct Payment of 26 hours a week AND the flexibility to spend it on meeting my assessed needs.

VICTORY!

I've spent hours sitting through gruelling assessments, collating evidence, photocopying medical letters and writing my service user led "outcomes", and yet more hours telephoning, emailing and writing to chase people up and get this whole thing sorted.

I honestly do not believe that Nottinghamshire County Council know their arse from their elbow but the manager decided he wasn't going to argue over 3 hours a week and I get to keep my team of staff and my independence.

I am so relieved but I'll be happy when I have it all in writing!

It's been a long five months since my first review.  I was on 32 hours a week (which was three hours more than I needed because last year they gave me my husband's Direct Payment to me due to a complete mix up and a change in policy) but they cut my hours to 27 and said I could no longer employ my cleaner for 6 hours a week because they said I only needed support for 1 hour a week to do all domestic chores, laundry and shopping.  For a family of five.  Putting this into context, it takes around 20 hours a week and I can't do more than 5 minutes without making my health worse, getting completely exhausted, flaring up symptoms or collapsing.

I complained and they did another review based on a policy that didn't actually exist, then they did another review and said I only needed 23 hours a week.  I shouted at them.  Lots.  I made an official complaint, I wrote to my MP, I ranted on Nottinghamshire County Council's Facebook page and generally kicked up a fuss.

I tried to juggle everything around but I couldn't meet my needs with 23 hours, especially considering I was only allowed to spend four hours a week on domestic chores and one hour a week help with packing away an internet supermarket delivery (apparently I lost the human right to leave my home and go to the shop).  Part of my budget was spent on taking my children to school and as summer approached by almost 10 year old daughter asked if she would walk to school on her own.  I agreed which halved my child minder costs, allowing me to reduce my package to 26 hours.

After many emails and phone calls explaining the situation and trying to find a solution the manager apparently agreed to 26 hours and flexibility in my package.  I can keep employing my cleaner, I can pay my childminder to take my youngest child to school and I can continue to pay my personal assistant, who is worth her weight in gold.

I'm really angry that it has taken so long to find a resolution.  I have lost sleep and suffered stress related health problems including a heck of a lot of pain due to the mismanagement of what should have been a straight forward review, but I am pleased it's all over, at least until my next review!

Tonight I may celebrate with a small beer.  It's not good for my POTS and I'll have to forego my pain killers but I think I have earned it.

To anyone else fighting social services I urge you to not give up.  Stand up for your rights, if you don't no-one else will.

Why goal setting sucks...in my humble opinion

One thing that comes up time and time again in pain management is goal setting.  I have been told how important it is, but for whom?  The Occupational therapists and physiotherapists say you must make goals otherwise how can you measure progress?  But is striving for progress always helpful?  For me it most certainly isn't.

Goal setting sucks.  It reminds me of what I can't do and how out of control my life is.  It sets me up for failure and that make me feel worse, not better.

I am a highly motivated person and despite my poor health and disability I have made some pretty big achievements in my life.  I have written and published novels, mastered many crafts, I've published my own websites, organised a reunion event and with my husband I have raised three children.

I have also failed at a lot of things that most people take for granted.  I left school before completing my A-levels due to ill health, I failed at studying with the Open University, I failed my driving test and I have never been in paid employment.  I pushed myself towards those goals because they were expected of me, but I failed because I was too ill.  They seemed achievable at the time and I was encouraged to work towards them but I could not complete them.  That makes me feel stupid and useless, which is crazy because it wasn't my fault.

We are told that goal setting must be SMART, specific, measurable, agreed, realistic and timed.  When you're living with a chronic and fluctuating health condition setting goals can be just as challenging as working towards them.

What is achievable?  On a good day I might be able to prepare a light meal, with support from my PA or husband.  On a bad day I struggle to sit up in bed and eat a sandwich.  How can you determine if something is achievable when you don't know what you'll be capable of from one minute to the next?

Goal setting assumes that you are physically capable of making progress.  For some people that might be true. Some chronically ill people are mentally defeated by their illness, they sit in bed all day believing that they are not capable of doing anything.  I can see how goal setting might be helpful to them but not everyone is like that. I'm certainly not!

There are also some people who push themselves to extremes.  They set a goal that is not achievable and go ahead and do it anyway, then suffer more pain and symptoms because of it.  I'm occasionally guilty of that but I understand the boom and bust principle and how in the long term that only makes things worse.

My problem lies in the fact that at the moment I am not physically capable of making progress.  My ongoing health problems bombard me with varying symptoms every day whether I like it or not.  It's often too much for me just to manage the basic activities of getting out of bed, washing, dressing and eating.  My symptoms flare up for no reason at all.  I am not in control of them and despite my best efforts I can't stop flare ups happening. I am never symptom free.

That's OK.  It's something that I have learned to live with.  I know there is no magic bullet, I can't make my health problems disappear.  I do what I can, when I can.  I understand that if I do too much I will suffer an increase in symptoms and if I am lazy and sit on my bum all day long then deconditioning will make it harder for me to get up and do things.  It's all about balance.  I'm not exactly happy with that but I accept it.

So why do I need goal setting?  I don't need goals to make me motivated or focused, I don't need to be encouraged to do things.  Of course there are things that I want to do but I know that if I could do them, I'd already be doing them and if I can do them now maybe I'll be able to do them in the future if things ever improve.

Some people must be helped by goal setting otherwise they wouldn't keep teaching the principles, would they?   But I know from speaking to other chronically ill people that I'm not the only one who finds it unhelpful.

It's condescending, I know how to plan and break tasks down, I just can't always do it because I'm ill.  It's also depressing when you set a goal and you know what you need to do to wark towards it but then you get too ill to even try.  It reinforces all the negative aspects of being ill and it's beyond frustrating.  It's even worse when people tell you to set easier goals.  If they are easy you just do them, you don't have to make any effort to do them, there is no achievement, it's not even a goal so it feels completely pointless.  It doesn't help you progress. It just sucks.

I am giving up on goal setting.  It doesn't work for me.  I know that any progress I make will come naturally.  If I have to strive for progress then it's going to come at a price, and I usually can't afford it.

Looking cool when it's too hot with POTS

Hi!

It's that time of year again when it's too hot to move and my POTs is going crazy with the heat and humidity. One of the things I use to help with my POTS symptoms is compression stockings but when it is this hot I really don't want to be wearing thick socks or tights.  All is not lost!  I have a solution for looking cool and staying cool.

I prefer to wear knee high compression stockings as I have trouble finding thigh highs that fit me.  Last summer I discovered open toe knee high compression stockings.  They don't look so glamourous on their own:

But team them up with a maxi dress and a cute pair of sandals and you can barely tell I'm wearing them :D

Pretty cool, huh?

You can buy a selection of open toe knee high and thigh high stockings and even compression tights from Pebble UK Prices start from around £15 a pair.

I think I'm allergic to summer :(

In the depths of winter when I'm struggling to keep warm and suffering from yet another sinus/chest/throat infection, people always tell me I'll be better in the summer.  I always hold on to that hope but every year I seem to get sick as soon as the sun starts to shine.

Most of my hospital admissions in the past five years have been in the summer.  Between the month of May and August I seem to come down with everything from hayfever, dry cough and breathlessness, tonsilitis and post strep reactive arthritis, worsening constipation, lower abdominal pain, kidney pain and UTI/cystitis symptoms, and headaches, sore eyes and fatigue.

I used to love being outdoors but now I seem to spend most of my summers stuck inside struggling to cope.  Am I allergic to summer?  We are always moaning about the weather here in the UK but when it starts to get warm the heat just drains every last ounce of energy from my body.  It takes all my effort just to function, which is not ideal when the kids are off school and I just want to get out there and do stuff with them.

At the moment I'm still struggling with the Sjogren's flare and the flare up from overdoing it on the rehab course.  I've also had a lot of organisational work to do.  I wrote to the rehab team giving them feedback on the course, which they appreciated.  I wasn't very happy when the team wrote to Dr Mittal with their version of events.  They made it sound like I didn't try and that I left because I was worried about the cut in my social care package, which couldn't be further from the truth!  I telephoned them and the physio I spoke to said they didn't mean to blame me so I have written to them explaining things from my side.  The course was simply too physically intensive and flare up my symptoms, that's why I had to leave.

I asked if I could go and see Dr Cohen.  I was originally referred to her because Dr Sobey from the EDS Service in Sheffield said I was a complicated case and Dr Cohen was the only doctor in the country with the knowledge and expertise to diagnose me.  When I got my appointment it was to see Dr Mittal but I was reassured that she was every bit as good as Dr Cohen.  Unfortunately she was not able to diagnose or even investigate my possible autoimmune issues, she just confirmed my EDS Type 3 diagnosis (that's the old name for Hypermobile type) and referred me for rehab.

I received an email from Dr Cohen's secretary telling me to go and see Dr Mittal again.  I can't see Dr Cohen because she is "very busy" and currently booking appointments into next year!  I am a little disappointed.  Dr Mittal was nice but if she was going to do anything about my other issues why didn't she do it in January before she sent me on the rehab course?  I guess I'll have to wait and see.

My diary is full of appointments over the next few weeks.  I'm going to the POTS clinic in Sheffield on Monday to talk about my trial on Midodrine.  I was only on a low dose but it didn't do anything for me other than cause some irritating side effects.  I'm not sure if it's worth increasing the dose as it interacts with a lot of other medicines, including antihistamines, non-steroidal anti-inflammatories and steroids.

I have an appointment at a pain clinic to see what we can do about the pain in the back of my head and neck.  My GP thought it could be occipital neuralgia, which I happened to mention at the previous appointment but I let her think it was her idea ;)  The treatment could be injecting a local anaesthetic and steroids into the back of my head.  I'm not sure if that's such a great idea as steroids are not recommended in EDS patients and local anaesthetics are not always effective, but the pain is restricting my movement and preventing me from doing any physio so I've got to do something.

I'm going down to London to see Dr Mittal in early August and two weeks later I have an appointment to see a rheumatologist at Bassetlaw about managing my Sjogren's Syndrome.  I'm not too hopeful about that, my previous experiences of local rheumies have not been positive.  I can but hope!  I think I need better treatment as the hydroxychloroquine, eye drops and mouth gels are not keeping things under control.  I don't even know if my Sjogren's is primary or secondary to something else.  Maybe they will be able to answer some of my questions.

As for the social services debacle, I am STILL waiting to hear back from the regional manager.  I emailed him five weeks ago and have not yet received a reply.  The nice lady from the complaints department has been chasing him on my behalf and he hasn't even replied to her yet!  I telephoned his secretary yesterday and she appologised for him not being in touch.  It's not exactly polite to ignore someone for five weeks and not even acknowledge their email.  The manager was out of the office yesterday so the secretary was going to speak to him today about the matter.  Fingers crossed we get somewhere because this has been going on for five months now and I just want it sorted.

It's lovely and sunny outside.  I might dose up on antihistamines, put on my shades and try and absorb some vitamin D - symptoms permitting!

Apathy or revenge?

I'm getting really bored of the Social Services saga but it seems they are in no hurry to resolve issues, or even do their jobs properly.  I know people are busy but whatever happen to common courtesy?  Or even common sense?

On the advice of the nice lady at the complaints department I contacted the manager's manager two weeks ago to take my complaint further.  Believe me I have tried to figure out the new budget but there is no way I can meet my needs and keep myself out of hospital with 23 hours support per week.

I sent the manager an email.  It's been 15 days since I sent it and he has not even acknowledged receipt of it.  I emailed again last week but still no reply.  The complaints lady has also contacted him twice but I've still not heard anything.  I am not a patient person so I've contacted my MP about the matter.  Perhaps that will get his attention?  I can only hope.

Last night I realised that the social workers hadn't kept a couple of their promises.  In late April the team manager offered my husband a carers assessment and I specifically asked if they could send him the forms.  In early May I completed a permission slip for a referral to Occupational Therapy and returned it to the department.

I hadn't received the forms or an OT appointment so I telephoned the team manager today to find out what was happening.  Guess what the manager said?

"We haven't made the referral to OT yet because you were going away on a course."

WHAT?

It's been six weeks since I returned the permission slip and they knew what dates I would be away for, so I asked why they hadn't made the appointment.  I got the same answer, because I was going away on a course.  I asked why that prevented them from making an appointment and the manager abruptly told me she had answered that question already.

Now I know it's difficult trying to make arrangements when someone has plans but it's not impossible.  I telephoned a consultant's secretary the other day to rescuedule an appointment that had been made for me. The first question she asked was, "Are there any dates you're not available?"  It's common sense, not rocket science, but apparently the concept is beyond Social Services.

When I asked about the carer's assessment forms the manager believed they had already been sent out.  They hadn't.  I got an email from one of the review workers this afternoon saying that the forms had been put in the post and they had made a Priority 1 referral to OT.  About bloody time!

I've never been well enough to have a job but I take a pride in the things I do.  I try to keep my word and reply to communications in a prompt and timely fashion.  I'm not sure what is going on with Social Services.  Is it apathy?  Are they doing it on purpose as revenge for me spotting the non-existant policy plot to do people out of domestic support?  Or are they just completely incompetant?

Answers on a postcard...

My Diary of the Royal National Orthopaedic Hospital Rehabilitation Programme (Hotel Based) By Clair Louise Coult

Hello Watford!

I've just arrived at Mercure Watford hotel to start my Stanmore rehab programme tomorrow.  I'm pretty nervous about it all but I know I'm lucky to be here and I'm determined to make the most of it.

My room is OK, a little tired and dated but it's quite big and has everything I need (although more storage space and power sockets would be nice).  The only problem I've encountered so far was actually getting to my room.  The hotel layout is a bit strange with the reception and dining room on the ground floor and rooms on the lower ground floor.  I arrived on my mobility scooter but and was given a room on the lower ground floor but the lift was broken so I was taken around the back of the building only to find there was no ramp to get up the kerb to the pavement.  So I went back to reception and eventually they found someone to take me around the other side of the building to get in a side door and I made it to my room.  Reception gave me a courtesy call just to check everything was ok, which was nice.

Day One Week One of Stanmore Rehab Hotel Course

I was pretty nervous this morning but today has been a pretty good day.  I had to make my way through the Mercure Watford car park to get to the restaurant for breakfast.  I hope they get the lift fixed soon!

Breakfast is from 6:30am until 9:30 am on week days.  It's a self service buffet and caters for most diets.  Fresh bread, toast and pastries, cereals, yoghurts and fruit juices, then the hot buffet with fried and scrambled eggs, bacon, sausages (and vegetarian sausages), mushrooms, tomatoes, beans and potato rosti plus a selection of fresh fruit and of course tea and coffee.  There are also specials available, porridge, kippers and eggs Benedict.

The welcome meeting was a bit chaotic as we everyone had been given different times.  We ran through a few things, had the chance to ask questions and get to know each other.  Our group is all ladies and we all have EDS.

I asked a few questions and mentioned my personal budget being reduced.  The psychologist said they may be able to help me by writing to social services and explaining my condition and why I need support to manage my health

We had a session on pacing.  It was very interesting but it's going to be difficult to implement as my baseline is below the everyday tasks that I need to do so it's going to involve some creative thinking.

Lunch was quite impressive.  They put on a buffet of poached salmon, humous and crudités, rice salad, pizza and potato wedges and salsa, followed by chocolate mud cake.  Two of the ladies had special dietary requirements and the chef made them up platters.  The hotel is really accommodating and the chef can make anything we want as long as we order it the day before.

I had a rest in the afternoon before going to my physio and OT assessment.  I was really nervous about it, I don't have the best track record with physios but they were really nice.  We talked about what I'd written on my assessment form, talked about my goals and discussed the hydrotherapy sessions.  I was a bit anxious as I always feel ill when I get out of the water and it takes a few hours to recover but we're going to take things slowly and see if I can manage a few minutes.  That's the great thing about this course, it is tailored to you personally so you're not pushed into doing things that might make you worse and you can concentrate on the things that matter to you.

The restaurant opens for dinner at 7 but our decided that was a bit late so we're arranging to eat at 6.  There is the option of room service too so basically you can have your meals whenever you want.  I've not decided what I want yet but if it's anything like lunch I'm sure it will be delicious!

Day Two Week One

 

Had a lovely breakfast with the ladies on my course, then went to stretch class, which for me was a bit of a disaster :(

Yesterday we were given a pack with our timetables and all the information about the course, which included 23 different stretches.  Some sitting, some standing and some laying down.  I started to come unstuck at the sitting and raising one leg as my right hip wasn't keen on me doing that.  I tried the standing on tiptoes, supporting myself on the back of a chair but my posture was awful and I went dizzy so sat down and skipped the next couple of stretches.  I really started to hurt when I laid down on the mat.  They asked us to stretch out our arms and legs which really hurt.  They said stretch less but I found that hard to do too as there seems to be a switch point between not feeling anything and pain.

I felt like a failure watching everyone else making the effort while I nursed my sore neck.  I know I have to try but everything was too hard for me.  I spoke to the physio afterwards and she said I was doing too much and she recommended speaking to my own personal physio about it.

I took my muscle relaxant as I was in a lot of pain and I had my OT appointment next.  My OT is lovely and we talked about what I need help with in my daily life such as personal care, managing household tasks, shopping and socialising.  I signed up for crafts and gardening as my functional activities and showed off pictures of my hand spun yarn and knitting projects.

After a little break I had a meeting with my personal physio.  She'd been told about my problems in stretch class and said it was beyond my capabilities at the moment but we could try a different technique - mindfulness.  She recommended at the next stretch class I should get into the starting position for each stretch and visualise doing the stretch if I can't manage to do it.  We had a really good chat about things, my expectations of the course and finding the right starting point for me. 

We also talked about the hydrotherapy.  All classes are mandatory but she told me not to go to the group hydro session, she would arrange a one to one session on my own and just get in the water, float for a few minutes and then get out and see how that affects me.  She explained how the heat, humidity, water pressure and physical exertion all affect my body causing me to feel ill after being in the water because of my EDS and POTS and she took me on a tour of the hotel pool.  It was incredibly humid, which makes me feel quite breathless even just sitting down, but there are gentle steps (and a hand rail) that go down into the water so at least I don't have to haul myself up a ladder to get out of the pool.  After the feeling upset at stretch class I felt much more positive about things.  The physio also explained it's taken many years to get to such a poor state of health and there are no quick fixes, but once we find my baseline we can begin the long road to improving my fitness and health.

Lunch was amazing again, grilled chicken, broccoli quiche, humous and crudités, salad, sweet chilli chicken wraps, new potato salad and a fruit platter with melon, watermelon, pineapple and grapes.

After lunch there was a talk on joint hypermobility syndrome, what it is and why it affects our joints, then we had our functional activity meeting where we had a balance test, which was basically standing on a sensor pad which indicated if our balance is dead centre or over to the right or left.  Mine was 1 to the left, which is probably because my right hip is hurting me today.  We also talked about pacing and correct posture and we arranged our activity sessions.  I'm doing crafts next week and gardening the week after.  We get to learn how to pace our activity and achieve things without causing pain or overdoing it.

It's been a very long and quite emotional day so I'm going to rest for a while before meeting up with the others for dinner.

Day Three Week One

Today started with stretch class again, but this time I didn't end up in severe pain.  I got into the starting positions and visualised the stretches rather than doing them.  I know it sounds a bit daft but it's the first step on the road to being able to do the stretches and I felt much better being able to participate in the class, albeit in my limited capacity.  We are all different and this is very much embraced on the course.

Next was OT and we talked about pacing, writing an activity diary and using a traffic light system for activities, red for things that cause pain and fatigue, amber for things that are slightly less taxing and green for easy things.  My homework is to fill out an activity diary for a typical week so we can see where I can make changes to pace my life better and aim to make it to the end of the day without collapsing in a heap of exhaustion.

I had physio and we worked on my sitting posture and I was given a couple of simple exercises to try, very similar to pilates, tilting my pelvis back and forward, coming to rest in a neutral position.  We also discussed how I sit in a terrible position with my ankles crossed and my right ankle hyper extended so I'm going to make an effort not to do that!

Lunch was fab once again, quiche, chips,  pasta salad, tomatoes and cucumber, chicken goujons, boiled ham and carrot cake.  I am going to go home a few pounds heavier!

After lunch we had lifting and handling in the specially adapted kitchen.  We talked about safe ways of doing tasks in the kitchen and around the home, being aware of our joints and moving in the right way.  We also discussed aids and equipment such as kettle tippers, using chip pan baskets so we don't have to drain heavy pans of potatoes or pasta, and using a long handled dustpan and brush.

I was a little disappointed as I had to miss out on the trip to Stanmore hospital to do the sport and recreation class because of a transport oversight.  The staff knew I'd be bringing my mobility scooter but a non accessible taxi had been booked for the journey, so rather than risk being stranded waiting for porters at the hospital they advised me to sit this one out and they promised to have something sorted for next week.

Now I'm off to join the ladies for a drink and dinner, and find out what fun I missed out on.

Day Four Week One

The day started out with stretch, I tried a couple of the exercises this time but my right hip complained at me a bit and I had to modify one exercise as it made my shoulder go clunk.  I survived it ok and I am feeling more confident about it.

We had a talk with the psychologist about the impact of our pain and health problems on our friends and family.  It was really interesting and it got us thinking about how to deal with situations better and how to ask for the right kind of help when we need it.

The rest of the group went to the pool for hydrotherapy but I'd been advised not to go because I always become very symptomatic when I get out of the water.  They were going to arrange for me to have a one to one session where I can just float for a few minutes then get out so we can assess how that affects me but that is likely to be next week now.

Lunch was awesome, spicy chicken salad, chips, spring rolls, vegetable wraps and chicken skewers with fruit for dessert.

I had my goal setting session with the physio and OT in the afternoon, it was probably the hardest session of the week.  It was quite challenging and I got a bit emotional.  I had to come up with goals to try and achieve over the weekend but I really don't like goal setting as no matter how good my intentions are something always happens beyond my control and I fail.  The weekend is going to be a mad whirlwind of catching up with my children, getting all the laundry done, visiting my mum and a 3 hour car journey back to the hotel. 

I explained that whilst I understood the principles of what they were teaching us on the course it was going to be very difficult to implement them at home.  They questioned if I was ready to do the course if I wasn't prepared to make changes. The problem is I have so many health issues that are undiagnosed or not under control, too much responsibility as a wife and mother and the very real threat of my social services support being cut by a third means I don't know where to start.

In the end we decided on setting four small goals.  I aim to watch my posture sitting watching TV, be more mindful of my movements in the kitchen, discuss the friends and family class with my husband and kids and visualise the exercises from stretch class.  It might not seem much but Im going to make the effort.

Unfortunately this course is not going to address some of the problems that my doctors back home expected it too.  They can't diagnose the neck problems, or investigate my numb little fingers but I am finding the classes very interesting and I'm taking some ideas to try and implement in my life.

I was disappointed to miss two classes this week.  I have a one to one swim session planned for next week but they still haven't resolved the transport to the hospital for the sport session.  That is very disappointing considering this course is supposed to cater for the physically disabled and I'm not the first mobility scooter user to participate.

It's been a busy week and I've enjoyed the company of the group but I'm looking forward to going home tomorrow.

Day Five Week One

Today is our last day before the weekend break.  After breakfast we had DIY stretch in our own rooms then two classes in the morning.  The first was posture management which got us thinking about the stresses and strain we put on our bodies in different positions such as sleeping, sitting and working at a computer.  We got to try out some wedge cushions and back supports to see if they helped us.

The second class was sleep bingo.  It was a fun way of looking at sleep hygiene and we talked about all the good and bad things that might affect our sleep, such as having a TV in the bedroom, having a milky drink or doing exercise. 

After lunch we were free to go home but there was a small hiccup as our room key cards stopped working at 12pm and all our bags were locked in our rooms and we had to go to reception to ask for them to be opened again! 

So that was the first week on the Stanmore hotel rehabilitation programme.  It's been very educational and I've really enjoyed speaking to other people with the same condition.  I've just about coping being on my own for the week, the hotel staff have been great apart from a few niggles with the lift.  The hotel isn't totally wheelchair friendly but I have managed to get around. 

Next week is going to be pretty busy with lots more group session and personal OT, physio and psychology sessions.  It's not going to be easy but it's going to be worthwhile.  I also have to remember to take a few extra things, a four way mains adapter because I can't charge my phone, tablet and mobility scooter, and watch TV with only two plug sockets, plus I need an umbrella in case it rains on my circuit through the car park to the restaurant.

Day One Week Two Stanmore Hotel Rehab

A super busy start to the week.  After a weekend review where we discussed how we met, or didn't quite meet our weekend goals, we did a stretch class, which due to a timetable mix up we weren't actually scheduled to do so we had to rush slightly through foiling a flare up and anatomy and healing before lunch,

Foiling a flare up was interesting.  We discussed what a flare was, what it wasn't (i.e. new symptoms which should be investigated), what can trigger them, accepting that sometimes they just happen and when they do, what we can do about it.  We are going to formulate our own flare up plans and a copy will be sent to our GP back home so we can work together with them to deal with it.  We talked about the physical and emotional aspects of flares, what makes them worse, such as pushing through, or confining ourselves to bed, and what helps, such as using pain management techniques, tens machine, heat, ice, medication, pacing and distraction.

Next was anatomy and healing.  I've always been fascinated by human biology and I found this really interesting.  We looked at what our bodies are made of, bone, ligaments, muscles, tendons etc. How they work to help us move and the processes our bodies go through when they are injured. 

I had a break after lunch before I went to physio in the pool.  The plan was to spend five minutes in the water and do some floating but it was rather busy with preschool swimming lessons going on.  I got motion sickness from floating in the choppy water and I struggled to march on the spot with a noodle float so I said I'd rather just swim.  The physio agreed and I swam two lengths of the pool.  It's a pretty small pool so it wasn't that far and I got out straight away.  I felt quite weak and dizzy when I got out of the water, I sat on the edge of the pool for a while, then walked very slowly back to the changing rooms and sat down again before I got dressed.  I just about survived the experience, I wasn't as ill as I'd felt after previous swimming sessions in my local pool which was good.  We're going to try and repeat it tomorrow to see if two lengths is a reasonable baseline.  If I can continue to do that without making my pain and symptoms worse then I can think about increasing it to three lengths.

So all in all it was a very productive day!

Day Two Week Two

I didn't have such a great day today.  I didn't recover from swimming as well as I'd hoped and the pain and fatigue severely impacted on the very busy day.

It didn't help that all four fire doors were closed when I went to breakfast, which strained my neck muscles a bit opening them all on my mobility scooter.  Then before I'd even started stretch class I reached for my water bottle and got stabbing pain in the back of my head.  The doctors think it may be occipital neuralgia but I haven't been officially diagnosed or treated for it yet.

I only managed visualisations of the stretch exercises then I went straight into a meeting with the psychologist to discuss my problems with social services.  She thought I'd done everything I could but was doubtful that they would change their decision.  I made another appointment to see her about dealing with stress.

Next was my OT appointment. We went through my activity diary categorising all my activities as green for easy, amber for slightly challenging and red for more challenging.  I seem to be pacing my activities pretty well and problem solved a couple of areas where I wasn't. The OT said our next task was to see where I could work in some household tasks to deal with the loss of social services support.  I tried to explain to her that any increase in my activity results in an increase in my symptoms but she still thought I could manage it by implementing pacing and using tools such as a long handled sponge to clean the bath.  I'm not so sure that will be achievable.

I went from OT straight into a physio session. The plan was to have another 5 minutes in the pool but I was feeling too ill to do that.  We talked a lot about mindfullness, the physio said I'm like a swan on a pond, I appear to be calm on the surface but underneath I'm paddling very hard to keep afloat.  I thought that was a good analogy.  She spoke about how my sympathetic nervous system was always switched on, ready for fight or flight but I'm not sure what I can do about that.

Next was lunch followed by an introduction to relaxation.  I didn't find the class very helpful, I was already very tired and in pain from non-stop meetings all morning.  The OT gave a weird demonstration about an Australian guy living in the bush who walked to the lake every morning but one morning he was bitten by a snake and he ended up in hospital.  When he recovered he went back to the bush and one morning on his way to the lake he felt a pain and completely overreacted thinking it to be another snake bite but it was just a scratch from a twig.  I'm not sure what the moral of the story was but I struggled to relate to it. 

She talked about the sympathetic and para-sympathetic nervous system a little bit and then did deep breathing exercises, which I skipped as by this point I was feeling pretty awful.  I had to sit on the floor as the blood pooling in my feet was getting unbearable from being sat in a chair all morning.

I had a 20 minute break before my functional activity class, which was like a bizarre game of musical chairs.  We used timers to pace our craft activities, so after five minutes the buzzers and beepers would sound and we'd have to stand up, change position or do something else.  It was supposed to teach us not to get so engrossed in craft activities that we forget about our posture and pacing but it just seemed very artificial and unreal, not really something I could put into practice at home.

The final session of the day was goal setting, not my favourite subject.  I don't personally find goal setting at all helpful, I'm a highly motivated person and if I want to do something I find a way of doing it, but this course almost exclusively based on goal setting and making progress.  The talk covered making goals smart, specific, measurable, agreed, realistic and timed.  Unfortunately I was feeling pretty ill and totally exhausted and the oscillating fan was giving me motion sickness so I spent most of the class sitting on the floor shivering because I couldn't maintain my body temperature.

I went straight back to my room and had a bath to try and warm up but I think a combination of the previous week, the long journey, overdoing it in the pool and spending 8 hours sitting upright in the same chair was a bit too much for me.

Day Three Week Two - too much too soon

I woke up feeling dreadful and shaky - all the symptoms of having done way too much.  I was on a collision course with a full blown relapse but I didn't want to quit.  I dragged myself into the shower but it didn't help perk me up.  It was a struggle to get dressed but I got myself ready and headed for breakfast.  I bumped into the OT on the way and explained how I was feeling.  She arranged a meeting later that morning to discuss it.

I didn't feel any better after breakfast and I pretty much sat out all of stretch class as the pain in the back of my head was too bad and I was feel really ill and shaky.  I also felt really cold, which is a sure sign I've been overdoing it and need to rest.

I had a rest in my room then met with the OT and physio.  It was really hard admitting that I was struggling and couldn't continue with the course.  They suggested I go on the hospital course but I explained that would be worse as I'd not have the quiet privacy of my room to rest.  I tried to explain it was just the second week of the course was too physically intensive for me to cope with, the demands were too great and I had no chance to rest and recover in between sessions.  They said there was nothing they could do about that, it was the nature of the course and we were expected to make improvements.  The problem I had is I never seemed to find that illusive starting point to build upon.

They asked if I understood the nature of the course before I came on it.  It was sold to me as a pain management/rehab/educational course that would look at my individual problems.  My medical professionals back home also seemed to view it as a "get out of jail free" card and they discharged me because Stanmore were going to deal with it.  Unfortunately the course isn't designed to meet medical needs in that way.

With a very heavy heart (and a few tears) I decided I couldn't continue the course and I arranged to go home.  The staff supported my decision and they said they would contact me in a few weeks to see where we can go from here.  I have several options, from seeing the consultant at Stanmore to coming back at a later date to complete week three of the course.  They don't want to leave me stranded and want to help in any way they can.

I feel a complete failure for dropping out but in my heart I know I'm only doing it because I have to.  It wouldn't help anyone for me to stay on and make myself sicker.  I'm really upset about it, I feel like I've let everyone down and I've let myself down for not trying hard enough.  At least I have learned a few things to take from the course and I made it to the half way point.

For anyone reading this who wants to do the course, it really is worth it but I think I've learned you have to be in a good position to start it.  I am suffering with untreated medical issues which made it hard for me to fully participate.  The course is not meant to diagnose and medically treat people, it's to rehabilitate EDS patients who are ready to take the next step.  Unfortunately I wasn't physically in a place to do that but I would highly recommend the course to those who are.

EDIT - After Thoughts

Since doing the rehab course I have spoken to several other people about it and whilst it can be very beneficial for some people it has not proved helpful for everyone.  

The course has some failings, they try to tailor everything to your personal needs but they are not always capable of handling people with other medical problems.  I was told they understood POTS but after I left the course the team wrote to my consultant saying they were concerned about my light headedness.

The course seems to offer set answers for a set number of problems.  If you have a different set of problems they can't really help you.  If you are in reasonable health, don't practice pacing, say in bed/sit on the sofa all day, struggle to cope with your pain due to psychological reasons or you don't know the first thing about joint hypermobility syndrome then the course is great!  

The Mercure Watford hotel was described as being wheelchair accessible.  That is not absolutely true. The hotel has long standing problems with the lift.  It's not a normal lift, it's a platform stair lift.  The only way to avoid it is to go around the outside of the hotel, through the car park and use the fire door.  There are two very steep ramps on other levels of the hotel which a manual wheelchair user may struggle with.  The hotel is also very large so you need to be able to walk at least 200 meters to be able to get around.

The hotel has been described as having air con.  It does have air con in the public areas such as the restaurant but it does not have air con in the rooms, which can often be too hot or too cold.  Apart from small top opening windows and a radiator dial there is no way of managing the temperature of the rooms.  I believe fans and space heaters are available on request but the hotel only has a limited number available.

In hindsight I believe I should never have been put forward for the course.  I was sent to Stanmore to try and unravel my complex medical problems but all they did was confirm EDS and refer me to rehab.  I feel like I was rushed through and the consultant, Dr Mittal, was unable to offer any other advice because "the only treatment is rehab."  

I failed because I was not physically well enough to cope with the long days and mandatory physical activities. Participating in the course flared up other medical problems that Stanmore and my local doctors had yet to diagnose.  I have since been diagnosed with Sjogren's Syndrome and myotonia.

I'm afraid I have not found the course helpful at all.  The only physio exercise I was given was to sit up straight, which made my bottom feel very sore at the time (no explanation was given when I asked why) and it still does. No improvement there.  I have tried to be more mindful of my movements but I haven't seen any improvement.  I have resolved my issues regarding social care and have kept my current level of support, which the staff at Stanmore told me I wouldn't get, which at the time made me even more anxious about the problem.  I am still unable to do any exercises from stretch class and my head and neck pain is still unresolved.  I am waiting to see another specialist about my myotonia but that could take 6-12 months.