The unseen enemy… 17 May 2018

Sooo… it’s been a while. I had a mini meltdown last night so I thought it would be a good idea to offload a little… And as I am apparently so emotionally retarded that I have to offload to my laptop, here I am! I think I know why it happened. A combination of:
• being v tired as a result of being on a residential with 32 very energetic (and in some cases, needy) Year 6s (10/11 year olds for those who have not been institutionalised into the education sector)
• frustration at feeling that I am finding it hard to do things that I used to be able to do without even thinking about it when I was here last year
• generally being away from home and my emotional support network (amazingly supportive husband)
• more tiredness caused by missing my oxygen therapy this week because I am away from home
• someone being nice to me and asking me if I was ok. (The horror…!)

On the plus side, (and as you will be coming to realise, there always has to be one…) the other staff on the trip are absolutely lovely and being very supportive. So not all bad. Not everyone with ‘special needs’ is as lucky and are often actively discouraged from working.

First, let’s talk about my back. We are 4 weeks in now and things are not as rosy as I would have liked and it is still giving me quite a lot of trouble. That said, it seems to be a different type of pain, so maybe one element has been fixed and another one has become apparent. Also I was an idiot last week. Things were feeling good and I got a bit cocky and decided to do some exercise. I went for what I call a ’walk/run’. Not the 3+ mile, pushing myself to increase my pace type of run that I used to do 3 or so times a week back in the day, but a 2 mile walk on the uneven bits and gently jogging small stretches that posed the least trip hazards. (I once cracked my ribs falling while running after tripping on a tree root…). It felt GREAT! I loved it – it was almost like the old days. Amazingly supportive husband (aka my ‘carer’) joined me so he could assist in the event of an incident and I really enjoyed it. So what’s the problem…? Within in an hour of arriving back, I was in agony with my back and after a week off the painkillers I was scrabbling about for anything that I could lay my hands on and maximising the dose. I have been told off several times by various different people and I won’t be doing it again for a while. Consider myself well and truly told!
I was in a reasonable amount of pain last night after being on my feet too much yesterday and walking too far which contributed to the mini meltdown.

Also I have been to see a neuro physio for my FES (foot electrical stimulation) assessment. The experience did not leave me a with a warm fuzzy feeling. I felt pretty crap afterwards, if I am honest. That was almost a week ago and I am only just processing it, really. Long story short…. I am not suitable for a FES (even if I could secure the funding, which can be hard apparently) as I have rubbish feet. If my sisters are reading this, they will be nodding sympathetically at this point as the 3 of us have all been blessed with some sort of genetic ‘crap foot disorder’. My particular issue is that I am hyper reflexive and my feet generally lack structure. It sounds as if I am lucky to be walking at all, even without the MS. It seems that I have a couple of bowls of jelly on the end of my legs. On the highest possible setting, the FES could only manage to get my big toe to twitch a bit, rather than lifting the whole of the front of my foot. I am still not sure whether I am sad or not about my lack of suitability for a FES. I was quite surprised at how unsubtle it was. There are two electrodes about 3 cm square on the lower leg with wires going down to the pad in the shoe and more wires up to the battery pack on your waist. Wave goodbye to skirts that are any shorter than ankle length. Apparently there is a wireless version but not on the NHS. Obvs…

We did discuss other options to help with ‘foot drop’ including an ankle cuff that you attach elastic to that then hooks onto the eyelets of your chosen footwear. It is a very mechanical version of the FES. It is something that I can see being useful if we go for a walk and will allow me to walk further than I usually can, but in reality, it is not something that I see me wearing on a day to day basis. It is a very obvious ‘aid’ to walking and I feel as if I may as well wear a t-shirt with a slogan saying ”look at me – I have something wrong with me!”. It also majorly limits your footwear choice. I honestly think that my dad could design a more elegant solution.

We also talked about using a stick. As I explained to Emma (the physio), it is something that I occasionally do if I am ‘out for a walk’ as walking poles help me to deal with uneven terrain. Plus plenty of other ‘normal’ people use them so I don’t feel out of place. Emma suggested I might like to use a stick to help me on my ‘bad days’. I have no doubt that there are times when it might help but I am just not sure that I am ready to go there yet. It seems like giving in to me. Emma says not, but I think that once I start compromising on that, it becomes a habit that’s hard to break. Also, how do you explain to people that some days I need it and some days I don’t. Lot of people just don’t get that. Unless they have MS, of course….

So, Emma sent me away with some exercises to do to try and improve the general condition of my feet and an ankle cuff has been ordered for me. I cried in the car all the way back to school. I once again feel like I am asking professionals for help and that they are unable to do so. Not their fault, I know – just the nature of the condition. Doesn’t make it right though. I will continue to try and improve my situation and do all that there is within my control but it feels like I am on a battlefield fighting an enemy that I cannot see.