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.
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.