Drained

Well the clock has run down and I still have no clue what to write this blog post about. Last week I was full of energy but this week I feel like the batteries have been removed and I have been left discarded in the middle of the playroom. I have had two very restless nights on the bounce, a physio session yesterday and I am drained. It isn't very often I feel this fatigued but I am even struggling to ignore the siren call of my bed presently.

I am wondering if it is a combination of being back on antibiotics again, courtesy of a HS flare up. A mild virus, I have a bit of a cough / sore throat but it really isn't anything major, more of a mildly irritating tickle but feels like it did in the bad old days when it would go into Bronchitis. Of course being two years smoke free ( I gave up smoking on 6th August 2017 and haven't touched them since) I had hoped I might avoid a chest infection, especially as I am now taking zinc daily. With the change of the season, the air is getting fresher so my joints have thrown a hissy fit. Every day this week I have spent sat on my heated throw attempting to combat my joint pain with heat rather pain medication. My fingers are really bloody painful (including my thumbs), costochondritis has flared up, my right hip is painful, piriformis syndrome is rearing its ugly head and I keep getting a spasm in the right-hand-side of my back. I feel like I should really just dip myself in a vat of Ultrasound gel and have done with it. Every night I am spending around an hour giving myself an ultrasound treatment on various parts of my body. That in itself is draining but lowering the pain levels. This probably sounds like a huge moan. It isn't I am just stating the facts. I put on a good show but I am exhausted by it all.

It is deeply frustrating when my only desire is to be creative and I can't motivate myself to do it or the pain won't let me sit at my machines for longer than a few moments. I did manage to get a couple of bits done last week. For the first time I made patches out of my embroidery work and attached them to make up bags. I found the pattern on line but adapted it due to increasing the size by 10% and adding zip tabs to give it a better finish. 

I made these two for friends who are both going through an awful time. It is also part of me paying forward after receiving a massive parcel of fabric from a lovely lady called Beverley on Instagram. She has been supportive of my sewing and embroidery from day one - she sells stuff online and her work is amazing. She always is full of praise for my work, which makes me blush as I am so hyper critical. Both bags were made from the fabric she sent me, as will a couple more, that will be Christmas and birthday presents. 

I am itching to get started on working on these items but everything feels like lead. Maybe later on I will start to feel a bit better and I will be able to do some embroidery. I make the patches first, deciding on a design for each person, before then deciding on the fabric within my expanding stash that goes with it best. For the Lurcher bag I chose the blue leaf fabric because it went so nicely with the scarf on the dog. With the fox bag I chose the white and green as I felt it looked like sunlight through leaves and you were peering through the undergrowth and came across the fox. Sounds a bit whimsical but that is exactly how I work and I make no apologies for that. That's why I get so fed up when I feel so drained that I just can't work on a project. I know there is plenty of time but there are just so many things I want to do.

When I can't sew or embroider I spend a lot of my time looking at projects for the future. My whole life revolves around sewing / quilting / embroidery and I love it. I have never felt so creatively fulfilled.  Which is why it is so frustrating when I can't actively do stuff. I am lucky that I can do it, so I really don't want this to sound like I am moaning. Although thinking about it I am fully entitled to. I can't see many of my "well" friends coping with the amount of shit I have had thrown at me over the last 12 years. I have had several of them tell me they couldn't live like I do and that they would rather top themselves. I think, they believe that is a compliment but all I hear is that they believe the quality of life I have is shit and nothing could be further from the truth. As others have said long before me, "life is what you make it". You carve out tiny pieces that fulfil you whenever and wherever you can.

I have noticed after the last two Physiotherapy sessions that it is taking me longer to recoup the energy expended by attending. So that on top of everything else is probably what has caused me to be knocked on my arse. I know this state if fatigue is more than likely temporary and I just have to ride it out. I am currently just drained.

Scrap busting

Around two weeks ago I stumbled upon a sewing challenge on social media and thought why not. Up until now I have always been too scared to join in with sew along projects, as I never felt that my work was good enough or that I had enough experience. However with this challenge as it was using scraps of fabric cut into 2 inch wide strips or 1 inch wide strips, I felt that I wouldn't be under any pressure to be an expert quilter. 

I was in a bit of a panic though as I had joined two weeks after the challenge had started and members of the group were already sewing their strips together or had finished sewing them. I joined late on a Friday night, as I had been unable to sleep I had been on social media, when a video from Sugar Bowl Crafts  popped up. I watched it and thought that looks fun and it was promising a quilt made in record time. 

For the uninitiated a sew along is a just a fun thing to do, completely voluntary and you either are sewing part of a project that will be sent off and joined up with everyone else's or a project for you to complete at home. Some sew alongs require you to buy kits or set fabrics, others you get to choose your own. I liked this one as it is using scraps and I have been on a bit of a fabric buying ban because I am drowning in fabrics. Some I have bought and others I have been given. I always keep my scraps as I hate the thought of spending money on fabric and then not getting the maximum use out of it. I have scraps stored in 3 different locations and it was starting to feel overwhelming so the idea of a scrap-busting quilt really appealed to me.

I recently made a quilt for Mr Myasthenia Kid, using some charm squares ( these are 5 inch squares of fabric you buy pre-cut). He has wanted a quilt for ages and I kept promising him I would make one. But I never seemed to find the time. Since getting the embroidery machine and the dogs passing away at the start of the year, sewing had taken a back seat. I had lost my sewjo, I had done quite a bit of machine embroidery but actual sewing not much. As I was making Jay's quilt the love for sewing came back, I was planning on starting the Anna Maria Horner quilt kit I bought last year but have been terrified to start it in case I messed it up. Plus it is a huge quilt almost king sized and my largest quilt that I have made hasn't even been half that size. So this sew along was also a chance to put together a large quilt - my largest yet. So it was a win win on all fronts.

Jay's quilt.

The quilting on this quilt took over 4 hours and I lost two needles in the process. I am so pleased with it though as nothing was bought to make it. It was all made with items I already had in the house.

The sew along quilt's design was random strips of 2inch wide fabric joined together (or you can do one inch wide). My first job was to go through my scraps and pull out the fabrics I wanted to use and sort them into colours. Each piece of fabric tells a story as I can remember where it came from and what project it was used on. I had 4 charm squares left from Jay's quilt above, fabric left over from the lap quilt I made my mum for her birthday last year. Point to any of my fabric strips and I can tell you if it was gifted, came in a subscription box or if I bought it. I love that about this quilt it makes it highly sentimental and it is like my sewing journey in one quilt. 

I thought the sorting and prepping of the fabric would be a quick process. I hate this bit of any project, I loathe cutting stuff out. I am the worlds slowest and you can guarantee I will mess it up due to my poor maths skills (why thanks Dyscalculia ). I have a creative grids stripology ruler which has been a godsend. It has cutting channels on it every inch and half inch, so you can cut across the entire width of the fabric and know that the width will be correct.....as long as you chose the correct cutting channel. Eventually after several sessions over a few days I was in a position to start sewing the fabric into long strips.

I sorted the fabrics into colour groups. Group 1. Red / pink / orange, Group 2. Blues / purples, Group 3. Yellow/ cream / white, Group 4. Green,
Group 5. Grey / black / purple grey. Within those groups I put all the same fabric together and put them into piles (pinning them) that way when I sewed the fabric strips together to make my large strips I could choose fabric from a pile ensuring I didn't have to worry about sewing the same fabric together next to each other. It did sort of remove the randomness, rather than taking a chance and sticking my hand into the bag and pulling out a strip to sew.

I also at the same time cut one inch strips, from the same scraps and sorted them the same way.

Once the different fabrics were sewn together ( as above), the metres ( and it was metres) of fabric were then cut into 10 inch strips. For the 1 inch strips once they have been joined together you cut them into 5 inch strips.  The next part is to then sew 6 ten inch strips together to make your 10 inch block. Here are the 60 blocks that I have sewn, just so you get an idea.

I find it amazing how different the blocks look from a distance and all together.

Here are the first 23 blocks that I laid out on the kitchen floor.

I had to get hubby to stand on a chair to take the photo for me. Over the next few days as and when I had the energy I would put together the remaining fabric strips and turn them into blocks. Until yesterday when I finally completed all the 10 inch blocks I intended to make.

I had to do the layout in two settings as there was no more floor space!
Here are the remaining blocks, being "lab" tested 😄😄😄

I love the layout that I have in the photos so I am contemplating sewing the blocks together like this after they have been trimmed to 9.5 inch blocks.

I am now starting on my one inch fabric strips, joining them together. So far I have done the greys/ blacks/ purples and I have also completed the blues. I have three more huge bags of one inch strips to join together before I then cut them into 5 inch strips and turn them into blocks the same way the 2 inch strips were. I intend to use the 5 inch blocks as a border around the quilt - which is different to the sew along border but I like being different. I have no idea how huge this quilt will turn out but hubby is already making noises about it being on the 3 seater leather sofa as it combines all the fabrics that we have in the lounge along with many more!

I have really enjoyed working on this but my old injury / problem has come back. My nerve has become trapped in my neck again and is leaving my hand and forearm (left side) with pins and needles / numbness. It is just as well that I haven't spent any money on the quilt as I have had to book in with my private physio again which costs £45 for 30 minutes. She is ace but on a limited budget it's a lot of money to find in one go. So I am having to set a timer when I work and do 15 minutes, have a break and then do 15 minutes. I will be seeing her a week Tuesday.

It isn't just sewing that is triggering the trapped nerve but any movement at all that involves my arm. Even using the chromebook or taking a drink is enough to have the cold pins and needles feeling start. It is highly irritating as it means I am severely limited in the amount of time I can spend doing the stuff I love. I am hoping the physio can get the blasted thing untrapped and me more comfortable again.

I will be sure to update you all with my scrap busting quilt progress.

First Physio

Today, Tuesday 11th December was my first physio session, in 4 years. I had no idea so much time had passed since I had been to physio. I really wish that I had kept up with it, even if I just went twice a year as perhaps I wouldn't be in the mess I am now but life just gets in the way sometimes. Things take priority and then your routine falls by the wayside. Looking at it now I realised that I kept those exercises up for two years until I suffered my spontaneous CSF leak and then it was just too painful to do them.

I back to square minus 100, not one. I have zero core muscle strength. My shoulders are rolling forward and are permanently hunched. I am in pain from the base of my skull to my coccyx. When the doctor suggested physio I knew there was only one I was prepared to see and I was so lucky she was still working there. I use a private physio as she is prepared to listen to me and work with me. Don't get me wrong I love the NHS, I owe my life to the NHS as without their intervention as a child I would have died from an intussusception. However the NHS isn't great at treating the growing number of people with chronic illnesses, they want to fix you and then move onto the next patient. With chronic conditions like EDS, PoTs etc there is no fixing, so allotting us a certain amount of physio sessions at 15 minutes a go doesn't really provide us with much help. Especially if you are working with medical professionals that do not understand your medical condition.

The physio I worked with went away and learnt as much as she could about EDS, then we worked on a plan together. It soon became clear that I wouldn't be able to do the exercises 4 times a day, I would only be able to do them once a day and that was fine with her, Where as if I had tried to have that conversation with an NHS physio ( and believe me I have) you get made to feel lazy or guilt tripped that you are wasting their time. Seeing her again today, she had already pulled my notes and immediately recognised me in the waiting room. She greeted me like an old friend.

My back is in a mess, I know that and she knows that. We both believe that I suffered a whiplash injury when I fell on the snow and ice back in March and that has probably caused the majority of the problems I have now. Basically my muscles are very tight and tense both sides of my spine with the right side being the worst. My muscles are now guarding me against further injury by being tense and barely allowing me to move. She described it as walking around with a clenched fist permanently. After 30 minutes your hand is going to start aching after a few hours it's going to be very uncomfortable. After months...well you get to the state I am in where everything hurts constantly.

Today's session was very gentle before we can even start physiotherapy properly we have to get my inflammation levels down and the muscles to relax a little.I had to lie face down on a couch. My face had to go through this little hole so I could only see the floor although I think I kept my eyes closed for most of it. Now I said the session was gentle but in no way was it pain-free. My nerves are misfiring and have become so sensitized that even the lightest touch is causing me pain. So imagine having someone examining every joint in your back. Some joints were ok, they were sore but it was bearable, others had me levitating off the bed as I yelped and tried to squirm away from the light pressure being applied. 

My physio tried to massage some of the muscle knots out but it was so painful she decided to use the ultrasound machine first. It's so weird you just feel this probe going over your neck, (sides and back of your neck) and then when she massages them the muscles are much looser and nowhere near as painful. I know that the muscle knots need to be removed but it is a painful process, the feeling after they have gone is sublime as you feel freer and can move more easily. 

By the end of the session I could feel the muscles were a lot looser and more relaxed than when I had started the session. However in the hours since the pain has started. It's not horrific but I do feel battered and bruised. The weirdest thing is I have a lot of rib pain this evening. I am not sure if that's because I spent a lot of the session lying on my front or if my back muscles are going spasm ( but a much milder version than normal).

I turned up to today's appointment with my left arm burning with pins and needles in my hands. I left the session with both of those gone and they haven't returned in the 4 hours since I have been home. To me that is a massive improvement as since July I haven't had a day without constant pins and needles. 

My physio says it's going to be a few sessions of ultrasound and massage before I can start having more traditional physio. My next session is the 19th December. 

I am absolutely shattered after today's session, I had a busy day yesterday with getting my hair done and seeing a friend. If I could I would have stayed in bed all day. I am just hoping I can sleep tonight rather than what usually happens where the adrenaline starts to flow and I am tired but wired all night!

Physio update

For those of you who don't follow on Facebook, plus for those of you who do and want more details I thought I would provide you with an update on how things are going.

I have been religiously performing my physio exercises (Pilate's based) for over 5 weeks now. Last week I had my first follow-up appointment and Kate was impressed. I have mastered the technique of keeping my pelvis still whilst carrying out the exercises, so much so Kate my physiotherapist believes I could have a tray full of drinks on my abdomen and not spill a drop! I had been secretly fretting that I hadn't been performing them correctly - you know me I like to worry about the smallest of things, so it was good to know that I had getting it right.

The difference in my back pain has been phenomenal. Before starting physiotherapy and seeing the spinal surgeon I had been confined to bed for weeks due to the pain. Even in bed I couldn't get comfortable. All I could do was apply hot water bottles and take copious amounts of pain medication. I was thoroughly miserable and there were  more and more things I was simply unable to do due to the pain. 

I am probably one of those most sceptical people you could ever meet in regards to physiotherapy. I have seen physios on and off for years, only two of them have been half way decent and this was years before I had the diagnosis of Ehlers Danlos Syndrome. 

Other than the two lady Physios who in the past treated my severely sprained ankle and a case of Plantar Fasciitis in both feet, my experience of physiotherapists hasn't been great. One was so bad in 2011 I just stopped attending. She claimed to have specialist knowledge of EDS, that may have been the case but she had no knowledge of Dysautonomia and what she was asking me to do was positively dangerous. Asking someone who regularly blacks out due to standing to increase the amount they walk around by 10% every week clearly shows either a) she doesn't understand dysautonomia, b) doesn't believe that I would faint, c) simply doesn't care and uses a one size fits all approach or d) does not have the specialist knowledge she claimed to have because walking causes me such a significant amount of pain . My gp actually tried to refer me back to her this year when I told him I was having private physio. I told him exactly what I thought of her methods and he replied "That's a no then?".

Kate has been honest from the start and said she knew very little about Ehlers Danlos Syndrome or Dysautonomia and would be led by me, she would conduct research to find out the best way to treat me. However I having heard all that guff before I didn't really believe her and left the first session thinking I would give the exercises a go but wasn't expecting any massive improvements.

By the time my second appointment came around last week the results were quite  astonishing. I really wish that I had taken measurements of my stomach before commencing the exercises as my tummy is now the flattest it has been in years. However that is just cosmetic, the results on the back pain front have been amazing. Now my back pain has not disappeared completely, nor have the muscle spasms but now instead of my back being sore for days on end the pain just lasts a few hours. The spasms can last anything from a few minutes to an hour or so which is a massive improvement because on bad days all that was needed to start a spasm was for me to move my arms above waist height. I still can't lift anything heavier than a cup of tea without landing myself in trouble and I still have to be very careful how I move but it is still an enormous improvement. I feel like I am getting some of my life back now that the pain has reduced. I had no idea how badly the pain was affecting me psychologically.

Initially when the back pain started to ease, it happened at around week two, I just assumed I was coming out of a flare up. Once I got to week four and  the improvement had been sustained I had to admit that the physio was working. Hubby told me my posture was also much improved and said "You aren't moaning as much about your back" meant in a loving and kind way I am sure! I do find the exercises demanding even though they are below what would even be classed a beginners level of Pilate's and they are mentally tiring as well. It is all about control, as anyone who has EDS will tell you floppy bodies are very hard to control. I need to have complete quiet whilst completing my exercises as I need to keep focused on what I am doing to ensure I perform them accurately.

Last week the physio session was very painful. Kate informed me that between our sessions she had been researching EDS and Dysautonomia and had found some more exercises she wanted me to try. However before showing her my exercise technique she wanted to massage my back to try and get the muscles on the left side of my spine more relaxed. When a physio says massage from previous experience I know its going to hurt but I also know afterwards my back is going to feel wonderfully loose. Kate had been observing my gait when I came in for appointments and could see I was holding myself in such a way that was causing a lot of tension down the left hand side of my body. She must have worked on my back for a good 30 minutes. There were some sections such as my thoracic spine and the base of my neck that were incredibly painful. The muscles did seem loser afterwards but the following day the pain in my thoracic spine was very intense and took hours to get under control.

Kate was happy with my technique when I performed the exercises and I told her how much I had enjoyed doing them. She then started showing me the next 4 exercises she wanted to introduce. Unfortunately one has had to be adapted again to below a beginners level simply because I don't have the strength to be able to perform the exercise safely. Like many people with EDS I have weak muscles, I can not perform any exercise where both legs are lifted at the same time. I struggle with lifting one leg out straight from the knee as my technique just collapses if I don't keep reminding myself to elevate my leg. It is frustrating for me when I think back to how fit I was and how much walking I used to do to now have so little strength in my legs. Even now after 4-5 weeks of performing the exercises I can't increase the number of repetitions due to their weakness.

One of the exercises I have been doing since my last appointment has been to increase the mobility in my thoracic spine. I know that sounds crazy with having EDS you would think that I would be floppy and bendy all over. Kate thinks that from years of my body naturally trying to protect myself this part of my spine has become stiff which then leads to pain and the vicious cycle starts. You don't move due to pain either consciously or subconsciously and then when you do move it is more painful. Completing this exercise has led to more pain in this area, it's not horrific but I am constantly aware that it is there and have been having to resort to hot water bottle again. It is a little disappointing and you start to wonder if you are creating more problems. I know the muscles and joints will be sore from not having moved properly but how sore is a "good" sore and when does it become a warning sign? My questions will be answered this afternoon and I will continue with my blog post then..... 

I was very sore after my appointment yesterday, not only did Kate perform very small and gentle manipulations on my spine but she also deep a deep muscle massage on it. This was painful especially on the right side of my neck as I shrieked Kate said "You're right-handed aren't you?" To which I squeaked "yes" in reply. I could feel how very tense that side of my neck was it must have felt like a sheet of steel under her fingertips. I always find the process of massage quite weird as initially it doesn't hurt too much, then the pain increases dramatically and then magically as the muscle finally admits defeat it relaxes and the pain is gone.  You can feel the way the muscle moves under her fingertips has changed because there is no more resistance its bizarre. Not enjoyable but I always feel better afterwards.

I only had a 30 minute appointment yesterday and the manipulations and massage took up most of that. Kate said I had tolerated much more than I had the week before which she was amazed at. What really shocked her was the complete change in my posture. She said my shoulders are not rounded forward anymore when I sit, I am walking better and my overall posture is now brilliant. She has found the speed in which it has happened remarkable. She confided to me that many of her patients take 3 to 4 sessions before they understand the mind-body connection needed when performing the Pilate's exercises. What she means by mind-body connection is the ability to think of a muscle in isolation and move it in a certain way. I was pretty pleased that I was an "A star" patient and had understood from week one how important it was to concentrate on the moves. I think I have my mum to thank for that and my dad. Both my parents were really into Yoga when I was a child and would get both my sister and I involved in their Yoga sessions which always ended with meditation.

I have been adding in some Yoga moves at the end of my home Pilate's practice purely to try and relax my spine. I have been performing the Cobra and the Cat which helps me remove any tension in my muscles after completing my Physio exercises. When I discussed this with Kate yesterday she said "where do you know about those moves? Because they are used in Pilate's" So I told her about my parents Yoga sessions and that I had done Yoga as a child. I think initially she had been worried that I had looked these up on the Internet and thrown them into my routine. Now she is aware of my Yoga family history as it were she is happy I am using the correct technique. She has already worked out my personality is very "Boom and Bust" meaning I push myself until I collapse, hence she wants to make sure I am doing everything very slowly and not jeopardising my health.

When I was fit and well I did exercise (again in a boom and bust way, which probably sped up my eventual collapse on 31st May 2008) but I found floor work  like stomach crunches etc incredibly boring. I liked bouncing around doing aerobics or walking the dogs. I joined a gym many, many moons ago and found the machines mind numbing. I have never really liked any exercise where I wasn't in constant motion. So I am bemused that now I am doing what I class as floor work (Pilate's) I am really enjoying it. I like the fact it is mentally challenging and time to focus on myself. I am loving the results less pain and a trimmer figure. 

It's not a cure for Ehlers Danlos Syndrome, I am still having frequent dislocations and hip pain, nor is it a cure for Dysautonomia, this morning I have had several mini blackouts and my heart is racing. It is just really nice after years of not being able to do things that I have found something that I can do which is safe. There is no risk of me fainting as I am lying down (well when I say no it should have been phrased there is a reduced risk). Also the fact I have a very sturdy pine coffee table next to where I complete my exercises means I can crawl over and get myself up off the floor when I finish my morning routine as I call it now.

I know Pilate's is not suitable for everyone and it certainly should not be attempted unsupervised for those of us with hereditary connective tissue disorders where the risk of dislocation is high. I am just extremely lucky to have found a Physio who is willing to learn about EDS and Dysautonomia, who will adjust exercises when she sees I can not complete them properly rather than blunder on and make me feel like a failure like physios have done previously. I know that she is just a phone call away should I run into trouble and my calls will be returned. Most of all I am enjoying myself, which when activities are limited is an absolute boon. 

Physiotherapy

Tuesday was my first intensive spinal rehabilitation physiotherapy session. The only word that really scared me, out of that sentence was "intensive". Having done zero exercise for the past seven years, any sentence with the word intensive in it is prone to do that. Sometimes  getting out of bed in the morning without passing out feels like intensive exercise.

My appointment was due to only be an hour but my medical history took up all of that. Due to being booked in at the end of the day meant that the physiotherapist extended the session. I don't think that could or would have happened on the NHS. I have always found NHS sessions to be rushed due to the fact the poor physios have to see someone every 15-20 minutes or so. There are long waiting lists and government targets to be met. 

Believe me I am not in favour of a private insurance based system, at the end of the day the physiotherapy unit I am attending is all about making money but it is very client centred. Treat the customer badly and they simply won't return. I don't want anyone seeking medical treatment reduced to the status of customer over that of patient. I am luckily currently I am in a position to afford the sessions, I am acutely aware that many people have only the NHS to turn to. 

I was very nervous before the session as I had no idea what it would entail. Before I have been pushed into completing exercises that aggravated my conditions and when I sought out the physiotherapists advice my (4) phone calls were not returned so I gave up. My physiotherapist asked if I had attended physiotherapy previously so I outlined my many experiences and made a point to say that I had given up before due to the lack of support when things had gone wrong. She was quick to provide me with the clinics number and let me know she would return my call asap should I run into difficulties.

The appointment got quite emotional for me as I had to tell her what sports I had done in my youth and what exercise activity I had undertaken before I got ill. Out of no where I was filled with an enormous sense of loss, it was like I had the rug pulled out from under me and as the tears flowed I felt horrendously embarrassed. I will be honest that sense of loss is not something I have come to terms with and I don't think I ever will. I told her I am 40 years old and I feel like I have the body of an 80 year old.

Knowing that I would be starting physiotherapy has produced a lot of negative inner voice chatter. It tells me that when I became ill I gave up too easily and that is why my body is in the state it is in now. The rational side of me knows that this is untrue. I had to give up dog walking because of the falls and faints I was suffering with in the middle of nowhere with no access to medical help. My three dogs, clever as they are can not ring for an ambulance or administer CPR. Had someone called an ambulance due to the terrain I was walking on it would have been extremely difficult to get to me. It was just no longer safe for me to take part in this activity and it was unreasonable to expect my husband to be responsible for me and three dogs on these outings. Also a lot of activities were given up because of the intense pain they caused. I think the tears were also a sign of my frustration with it all. 

The physiotherapist was quite up front and explained she had never treated a person with Ehlers Danlos Syndrome before, she had completed a little research before my appointment but was extremely grateful for the information that I provided her with. She had not heard of Dysautonomia so I explained it seems to coexist with EDS (but not with all patients) and that mine had progressed from a diagnosis of Postural Orthostatic Tachycardia Syndrome to Severe Autonomic Dysfunction. She made detailed notes and was visibly shocked when I provided her with a list of my regular medication.

Kate - as I will call the physiotherapist to preserve her anonymity, was very quiet and unassuming. I found it difficult to gauge how we were going to work as a team. After all this is a joint effort, I have to do the exercises but she has to ensure I don't injure myself and we are moving at a pace that suits me. She reassured me that we would be moving at a very slow pace and that I should not expect to see any improvements for at least 12 weeks. Twelve weeks seems like an eternity, so I have to keep reminding myself slow and steady wins the race. Going too quickly could cause a lot of damage and as I was to find out I struggled with even the most basic exercises.

The sessions are based on Pilates, something I have never done before and although the exercises were hard work I enjoyed the fact I had to concentrate so hard. Kate explained that with Pilates you have to think about the mind-body connection whilst you are performing them. You can't just flail your limbs around, you have to purposely control them and my god is that difficult for someone with hypermobility. Movement comes easily to me as everything moves way out of a normal range, control is physically and mentally exhausting. The only way I can explain it is to try to work with cooked spaghetti, nothing keeps the desired shape!

The first exercise we started with was The Pilates Rest Position, the link explains beautifully how to achieve the correct position. The most important thing for me with this position was to learn to keep my shoulders relaxed and not hunched. Due to my neck being very weak I have a tendency to unconsciously hunch my shoulders in an effort to keep my head up. As my shoulders have been doing this for a while they even do it when I am lying down.

 It's also very important to breathe correctly. Thankfully due to a wonderful teacher at primary school who taught music and organised the school choir I know how to breathe from my abdomen rather than my chest. Kate was a little thrown when I started breathing correctly without being asked. She wanted to know where I had learnt it. I explained I had been into singing when I was younger and both my parents had practised yoga when I was a child.

I also have a natural tendency to arch my spine when lying down, with my pelvis tilted back so it was important for me to gauge where my neutral position was. I really enjoyed all this learning although towards the end of the appointment I was panicking about how I would remember all of it. At the end of the session print outs were provided. Due to copyright law I am unable to use them on my blog.

The next exercise Kate taught me was the hip twist - these are all level one exercises here page 8, last exercise ( I am struggling to find good of these exercises as they are so basic and have been adapted from classical pilates). This exercise was unbelievably difficult. It was very hard to keep my pelvis from rolling out and not just letting my leg flop to the side. To control something when you have zero muscle strength is very tiring and after just 3 repetitions my legs felt like jelly and I was getting concerned that I wouldn't be able to walk out of the clinic even using my crutches. 

The next exercise was the scissors and you can see that on the link above on page 7 of the same PDF. This again was difficult as when you go to place your foot back on the ground you naturally want to arch your back. Throughout the exercise you have to maintain the neutral position. At the time when I was performing the exercises apart from having a rapid onset of fatigue in my leg muscles I thought how on earth could I possibly be strengthening my core (abdominal) muscles. Let me tell you I can feel it this morning, I am amazed at how much my muscles are letting me know they did a bit of work yesterday.

The last exercise I have been unable to find a picture of, its called the double leg stretch under the PilatesPro APPI method of pilates. I think the name is wrong on my print out because the legs are involved in a minimal way and the main movement is completed with your arms. To explain it very basically you are still in the resting pilates position.You raise your arms straight up, then you move them towards your head - all whilst keeping your back neutral. You then make a large circle with your arms and bring them back to the starting position of being straight up in the air. Due to my hypermobile shoulder joints we had to adjust this exercise as my shoulder blades were lifting me off the bed and out of a neutral position. I found that by making the circles much smaller it stopped my shoulder blades lifting.

My homework is to complete these exercises twice a day for the next two weeks. I have to start with two sets of 3 reps for each exercise and if I can increase this to two sets of 5 reps. Minimal stuff really but when you haven't exercised for years that's more than enough. I have promised Kate that I will not move beyond the tasks that she has set me so that I don't go into what she calls a boom bust cycle. Which is where I go mad and do far too much and then collapse. 

So far I have really enjoyed the exercises and how intensely I have to concentrate whilst doing them. I have already completed this mornings exercises whilst the dogs were out of the way still sleeping upstairs. I will update you with my progress as and when there is some as it is going to be a slow process.

Safety Advice

Please do not undertake any of these exercises without being properly supervised by a fully qualified instructor or physiotherapist. Do not undertake any exercise programme without first speaking to your doctor.