Disabled Facilities Grant Declined

My OT says I need a stair lift.

I've struggled on the stairs for the last 20 years but it's not something I've actually thought about, mostly because I am not some frail white haired granny, I'm a curvy lady in my early forties with bright purple hair.  I am in denial about how frail EDS makes me.

Two years ago an OT told me I needed a stair lift.  He said I could apply for a Disabled Facilities Grant from my local council but because my husband was in full time employment earning above the average wage he said we had no chance of getting one.  He also said getting a stair lift to fit the 'U' shaped stairs in our home would cost £9,000.

Nine grand for a stair lift!!!  Needless to say we didn't take the matter any further.

My current OT insisted that I really do need a stair lift.  I am not safe walking up the stairs, it is not acceptable for me to crawl up the stairs or slide down on my bottom.  She encouraged me to complete a provisional test of resources form for a Disabled Facilities Grant.

A Disabled Facilities Grant is given to disabled people by their local authority to cover large aids and adaptations to their home such as ramps, accessible bathrooms and stairl ifts.  If you are on a means tested benefit you automatically qualify for a full grant but if you or your partner is working then they take the salary into consideration and calculate what contribution you would have to make towards the grant.  That sounds fair enough, right?

The problem is the grant is for people on a low income and my husband earns a little above the national average wage.  We're not poor but we couldn't afford to take out a loan for £9,000.

Last week I got a letter from the council telling me that they have cancelled my application for a Disabled Facilities Grant because our contribution was greater than the cost of the works.  I thought this was a little odd because I haven't actually had a quote for the cost of the works.  I phoned them up to find out why we'd been declined.

Apparently they had looked at our form and based on my husband's salary they had decided that we could afford to make a contribution of £25,000!!!  I was gobsmacked.  To put that in perspective that is 75% of his annual income.  We are not poor, but there is no way we could borrow that amount of money.

Today I spoke to my OT on the phone.  She suspected that we'd get turned down but was surprised at the contribution amount.  She was quite frustrated, she really wants to help me but there is nothing more she can do.  The only thing she could suggest is going begging to charities.

The most frustrating thing for the OT is that my situation is not unique.  There are many younger disabled people (i.e. not pensioners) who need adaptations but because their partner works full time they have to fund thousands of pounds worth of work themselves.  This doesn't really seem fair when non-disabled people can spend their wages on nice cars and foreign holidays but if you are unlucky enough to become chronically ill or disabled you have to pay for everything.

I expressed my frustration to my OT.  Yes, I do get some money to help with the extra costs of living with a disability.  I claim Disability Living Allowance (I haven't yet been migrated to Personal Independence Payments yet).  I get £21.80 per week for my care needs and £57.45 per week for my mobility needs.  That money doesn't go very far when you consider my spending.

£600 mobility scooter
£550 powerchair
£40 wheelchair cushion
£90 crutches

Plus I'm looking at paying £300+ for a knee brace because the NHS can't help me.  I also have to pay £104 a year for my prescriptions, then more money for my vitamins, supplements, Xylimelts for my Sjogren's, High5 Zero tabs for my POTS, kinesio tape to keep my hypermobile joints from wandering out of place, gym ball, therabands and weights for my physio, £15 for a mandatory eye sight test due to the medication I'm on, £85 a year for dental checks and to stay registered at the private dental practice (more if I need work doing due to the damage that Sjogren's does to my teeth).  The list just goes on and on and on!

So it looks like there will be no stair lift for me.  I will have to learn to live with the pain and exhaustion, the crunching of my knee with every step, the wobbles, slips and falls because my local authority doesn't have the funding to help people like me.  Apparently work doesn't pay if your partner is disabled.

Looking after number one

From past experience physiotherapists are not my best friend. Their well meaning advice has unfortunately lead to more pain and suffering rather than better health and recovery, so I'm always a little nervous when I get referred to see someone new.

Today I met a wonderful physio, who for the first time in my life recognised what could be causing my pain. My muscles don't relax after being contracted. They stay tight long after the exercise or movement has been completed, despite me being in a physical and mental state of relaxation. This explains a lot!

My EDS consultant, Dr Cohen, thought it may be beneficial to have trigger point therapy on my neck as I suffer with very painful muscle spasms. The physio I saw today found a trigger point and tried to release it but she noticed that my muscle remained tight, and it was still tight several minutes later.
At this point I explained the problem I'd been having with my hands. A couple of years ago when I was investigated for Chiari malformation (which thankfully I don't have!) I showed the neurologist how if I grip something tightly my hand doesn't let go. She didn't know what it was but later wrote to my GP saying it was myotonia, which was a rare complication of EDS. I later discovered that it is not a complication of EDS and I asked for a referral to see Professor Mike Hanna at NHNN in London at his Muscle Channelopathy clinic. I have an appointment there next month.

Because my muscles do not relax properly the physio thought that trigger pointing may not be so beneficial so she showed me an isometric exercise for my knees to maintain the strength. It was a simple exercise that I had no trouble completing but after doing it the physio noticed that my muscle was still contracted. I was laying on my bed, comfortable, warm and safe, physically and mentally relaxed but my right thigh was tense. The penny dropped. This is why I feel muscle pain around my joints. The muscles aren't behaving as they should and that's probably why I'm ending up with trigger points which cause even more pain.

We had a great discussion about what I can do to help myself. I've always found heat beneficial so the physio recommended using hot baths and my wheat bag for relief. We also discussed the possibility of muscle relaxants. I have a prescription for diazepam for my neck spasms but it's only for occasional use as tolerance is an issue with diazepam.

I always get confused about the conflicting advice I've been given but the physio told me I need to put the past behind me and start looking after myself. I need to be more aware of my posture and avoid hyperextending and subluxing my joints. I also need to be aware of how activities affect my pain levels and not push myself to the point of pain. I'm not doing myself any favours my running myself into the ground.

I asked the physio what could cause my muscles not to relax properly and she said it could be fibromyalgia. I told her about my argument with a rheumatologist who dismissed all my complaints as fibro and told me to take gabapentin and do more exercise. She said that gabapentin and pregabalin won't help me because I don't have nerve pain and that exercise doesn't help most people with fibro.
I now understand a little bit more about the cause of my pain it's all starting to make sense. For many years I have described my pain as feeling like every muscle in my body is tense, even though I am relaxed. It's taken over 20 years for someone to pick up on it and I'm very glad they have. I understand now why the rehab course at Stanmore make me sicker, not better. The physio said that stretching would not help me, you can't stretch tight muscles, it would only stretch the already weak and over stretched ligaments and would provide no benefit at all. My goal now is to listen to my body and not push it to the point of pain because I that will only lead to more trigger points and more disability.


So now I have a good excuse for taking a nice relaxing bath - on doctors orders! :)

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!

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!

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.

My story

My name is Clair and I'm a zebra.

I've been chronically ill since my early teens.  I was a relatively healthy child, I did well at school and enjoyed doing dance classes but when I hit puberty things started to change.

When I was 13 my mum took me to the doctors because I felt unwell.  I was exhausted and achy but didn't have any specific symptoms.  They tested me for Glandular Fever (mononucleosis) but the results were negative.  The GP put it down to puberty taking the 'spunk' out of me.

I never really got better.  At 14 I had a severe chest and sinus infection that caused a high fever, severe head and neck pain and hallucinations.  A few weeks later I told my mum I couldn't go to school because I had the flu and my knees hurt.  It was July and I hadn't suffered any falls or injuries.

I had recurrent tonsilitis when I was 15, I had achillies tendonitis twice and I became very run down with boils in my arm pits and bottom.  I felt ill all the time, I fell asleep as soon as I got home from school and it was obvious something wasn't right so my mum took me to the doctors.

I was diagnosed with Post Viral Debility and told that sometimes it takes people longer than usual to recover from viral infections, but I didn't get any better.  I went to see a neurologist who said I probably had ME.  That diagnosis stuck with me for 23 years.  No-one ever dared challenge it and as there was no treatment for it I was left to manage my symptoms on my own.

Through the years I got progressively worse.  I suffered with joint pain in my ankles, knees, hips, wrists, elbows and shoulders but the doctors could find nothing wrong.  My blood tests were all 'normal' and my x-rays were clear.  I became physically disabled, the pain in my knees and hips made it difficult to walk and I had to start using a wheelchair outdoors.  I was unable to complete my education and I was never well enough to look for work.

I suffered at the hands of doctors who didn't understand.  They thought my symptoms were all in my head but I had no psychological problems.  They thought it was due to inactivity but every time I increased my activity my symptoms would get worse.  I had severe flare ups that left me bed bound, I got so ill I was admitted to hospital as I could not stand or care for myself.  I struggled with normal activities but had to fight to get support from social services.

I felt like a medical hot potato.  No-one wanted to see me, never mind treat me.  My GP told me to give up looking for answers.  Then by accident I found out what was wrong with me.  My children all suffer from growing pains, as I did as a child.  I Googled to see if there was anything I could to help them and I came across the diagnostic criteria for Joint Hypermobility Syndrome.  It was like a lightbulb moment.  This is what was wrong with me!

I went to my GP armed with fact sheets to ask if I had JHS.  She told me she didn't know anything about it and to ask my rheumatologist.

My rheumatologist told me I had Fibromyalgia.  He gave me a leaflet which described people with hypersensitivty to pain, insomnia and depression - the exact opposite of me!  I questioned the diagnosis.  I'd already tried the treatments (tricyclic antidepressants, exercise and Gabapentin) and they made me worse.  the rheumatologist insisted I had Fibromyalgia.

I asked him about JHS again.  He examined me, told me I wasn't hypermobile but he was amazed that I could put my hands flat on the floor, especially considering I'd just got off my mobility scooter and hobbled across the room with my walking stick.  He wouldn't give me a straight answer and referred me to a physio.  She didn't think I had a connective tissue disorder and just gave me an exercise to strengthen my elbow, so I came to a dead end.

I don't give up easily.  I thought Joint Hypermobility Syndrome was a real possibility so I read everything I could about it and I made a private appointment with Dr Hakim at St John and St Elizabeth's Hospital.  Dr Hakim was brilliant.  He listened to my concerns, he explained things in a way I could understand.  He examined me, gave me a diagnosis of Joint Hypermobility Syndrome and best of all, he wrote up a treatment plan.

I finally found my identity.  I was a zebra.  A medical rarity.  Doctors are taught "When you hear hoofbeats, think of horses not zebras" but that doesn't mean zebras don't exist.  The more I read the more I began to realise that zebras aren't as rare as the medical profession think.  There are many other people like me who are misdiagnosed with other conditions such as ME, Chronic Fatigue Syndrome, Fibromyalgia and psychological disorders.  

In this blog I hope to share my thoughts and experiences.  I'm not qualified medical professional and I can't give medical advice but hopefully I can provide some food for thought.