There was an overwhelming response to my pregnancy news. Rightly so, despite being happy for me, there was a lot of concern as to how my M.E. would be affected. A lot of people were interested in what the journey of being pregnant and suffering from a chronic illness like M.E. would be like… so here I am!
One of the main things I noticed first happened quite early on. The bottom of my back was sore and when I moved it was painful. I spoke to a friend who has been in my position, and her advice was to have physiotherapy.
The very mention of the word ‘physiotherapy’ filled me with dread. I have had some really good physiotherapists but I’ve also had some really bad ones too that have damaged my health with the awful Graded Exercise Therapy. When I was first admitted into hospital in 2006, I had a physio. There was so little known about how to treat M.E. (I know it is not much better now) and the physiotherapists didn’t know how to handle a 15 year old who was so desperately unwell.
The ‘normal’ practice for a physiotherapist is to push your body into moving and getting fine motor skills back. They are not used to having to go with the body and to go slowly. It’s simply not how they are taught. They contacted AYME and were told to try Graded Exercise Therapy – this was a nightmare. They would push my body, despite my tears and protests. The exercise would be increased by 25% every week and you just had to do it. There was no choice as to whether I felt able to do the exercise. In their eyes, I needed to be able to sit up at a 90 degree angle and I would do it no matter what! My parents and I came up with a nickname for the physiotherapists, they were ‘physio terrorists’ to me! Graded Exercise Therapy is one of the reasons I became so unwell and stayed like it for many years.
Although I did have other more understanding physios, the trauma of GET clouded my view of physiotherapy. I have always said that I need to do some exercise to keep my body moving because once you lose functions, it is incredibly hard to get them back. I had physiotherapy and occupational health therapy to help me walk up the aisle on our wedding day. Rather than pushing my body, they worked with my body and what I was able to do on the day.
Anyway, I was referred to have my back looked at. It is a common problem with pregnancy. Basically, my pelvis ligaments and tendons were stretching and were not moving in alignment with the rest of my back, hence the pain. They gave me a few gentle exercises and some passive ones too. I find it very hard to put my trust in a physio or to be honest ANY physician because the relationship between M.E. and physiotherapy is such a challenging one. It has a messy history.
Luckily, doing those few exercises did not cause my M.E. to be worse. I now where a tubie grip around my bump as I wait for me to be big enough to wear a maternity belt! As I have started to grow more, I have noticed that my back is more sore but I am dealing with it a lot better. Having it start early on has prepared me for now.
Thankfully, the physio realised that my back problems were more deep seated, and I have been referred to a Woman’s Health Specialist to have acupuncture on my back. I feel really lucky to have had friends who have been in a very similar position to me.
My advice for women suffering with back problems due to pregnancy is: get it sorted out! I read a post on the Gas and Air blog about how most women should have some physiotherapy to combat what pregnancy does to your body. It shouldn’t be the norm that we just have to deal with extremities that come with being pregnant. There is help out there, so go for it! It is important to note, that many health professionals simply do not ‘get’ M.E. It is important to be really strong and know your body. If you feel an exercise is not helping, then you need to voice that. I find it really hard to voice my opinion because I am used to being told that something is all in my head. I feel quite proud that I have stuck to my guns this time and am doing what is best for my body and the baby!