Monday, 28 July 2014


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!

Wednesday, 23 July 2014

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.


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.

Friday, 18 July 2014

Why goal setting 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.

Thursday, 17 July 2014

Looking cool when it's too hot with POTS


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.

Wednesday, 9 July 2014

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!