It seems rather ironic that now that I have my super swish, lightweight chair I am beginning to get better mobility! I put this primarily down to having such a lightweight chair, mainly as it means that things that left me exhausted no longer do and I can spend that energy doing physio and exercise instead, which leaves me in a better position to get well again.
For example, last week I went into London and in the past that would have left me unable to do much at all the next day, in fact I more than likely would have had to have a sofa day or two in order to recuperate. This time I was able to work the next day and do my exercises. This is a distinct improvement!
Another thing that has happened at almost the same time is I have changed my diet. Really rather radically and I strongly believe this has made a big difference too. Aside from 2 meals a week (which I am keeping to allow a safety valve and a way to be more flexible and therefore staying on this new way of eating long term) I am eating vegan, wheat and sugar free. This difference this makes is astonishing, the constant pain has abated, the brain fog has lifted and I have a lot more overall energy than I did before. To me this than more than makes up for the restriction in what I can eat.
Now I have to say I have never been a foodie at all, when I worked in PR we would often take clients to quite posh restaurants and I hated it as I would struggle to find anything on the menu I could eat. I was bought up on a traditional ‘English’ way of eating of meat, potatos and two boiled veg. I am really quite happy to eat in a proper ‘greasy spoon’. I have often been heard to say I would be really pleased if I could just take a tablet three times a day rather than having to eat. I do love sweet stuff – especially chocolate – and carbohydrates, so this way of eating is really tough for me.
This site is not going to turn into a recipie site with my experiments in food, because I just don’t care about it enough. I can highly recommend Deliciously Ella, as providing all the recipes you want. Interestingly she was bed ridden and then using a wheelchair from EDS/JHS and also POTs. And she has made her life so much better by following this way of eating. So do investigate her work (and others such as Tara Stiles and Bit of the Good stuff) if you want to find out more about this way of eating.
The last piece in the triangle of getting well is I have started seeing an NHS Rehab person. It took a few jumping through hoops before I got here, but I am so pleased to see her. All the other things I have tried, such as physio and hydrotherapy have been a complete waste of time for me. This is mainly because regardless of pain and how much energy it has taken I have forced myself to keep exercising through all of this. I have done yoga most days, so I have excellent core strength, swimming so I keep my body moving and an ok level of cardiovascular fitness and more than anything I have been walking my dog. This has been the hardest of all. Deeply frustrating, exhausting, painful and really hard work. I have increased a little at a time, like 1-2 meters more at a time. I am not known for my patience and so this has been an exercise in restraint as much as anything else.
With my new rehab person encouraging me I am going further and more than that she has taught me how to walk properly again, so I am not doing my drunken staggering anymore. It sounds silly but I have had to think really hard about every step that I take, which obviously takes time and physical and mental energy. But it is really paying off now and I am starting to venue back out into the woods where I used to walk Buster, rather than the same place which has lots of benches! This has been so rewarding for me.
The other great thing about my Rehab lady is she GETs me, she has just joined my old triathlon club and really understands my competitive mindset. That has made such a difference, being understood and heard for the first time in all of this process, rather than being treated like just another person. She has encouraged me to get a turbo trainer set up, so I can cycle on my racing bike and not have to worry about traffic, falling over or anything else. I hope by next summer I might be out cycling again.
I am still using my wheelchair if I am going out for a period of time, or if I am going into London, or if I don’t know how long I will be out, but I am beginning to walk shorter distances again now. I have a few school meetings coming up and where in the past I always would take my wheelchair I am going to see how I feel on the day and maybe go without my chair. I still cannot stand very well at all, so it really helps to have the chair for those times.
It takes a lot of energy and focus to completely change my diet and increase my exercise as much as I have, however I feel it is a worthwhile investment that is really paying dividends. I really hope that this is not pride which comes before a fall. I am being very careful and gentle with myself to prevent a relapse!