Throughout the time since my diagnosis of Relapsing Progressive Multiple Sclerosis I have been asked what the worst or hardest thing to cope with is. My answer has varied as things are always changing, so what is upsetting you on one week, may be totally different on the following month. It has actually taken me a long time to work out exactly what the one thing that makes it really hard to live with MS and it isnt what most would think. The worst thing, is to have to ask for help and then to accept it. It doesnt sound like much does it, to ask for help, trust me it is huge. I know that not all of you reading this have an illness at all so it may seem a little odd to you, but wait and that day will arrive even if it is just due to old age, you have been warned.
It goes against everything you have ever been taught or become use to. Once you learned to walk you fetched things for yourself. Once you learned to talk you expressed yourself. Once you had learned anything it became part of a growing collection of your abilities, now suddenly you are going backwards, still learning but not always able to do. If someone offers to help, well that is different that is support and caring, that is allowed in life by all, but asking, no. It is several years since I first had to make that words pass my lips and every time it has, it hasnt been any easier. People who know me also know that I am fiercely independent in everything I have ever done. There is nothing that I would let defeat me and nothing that I wasnt prepared to have a go at. From household DIY, electrics, plastering, painting and decorating, with effects and styles, that I knew nothing about until I had to do them, so having to say I cant, because that what asking for help is, its a horrid admission, I cant do it any longer.
I know as you and everyone that might read this, that our loved ones, friends, colleges and family are more than happy to help and that to them this isn’t a problem, but it is all about perception and self image and little to do with, if anything to do with our health. It is our self image that becomes disabled not our bodies, who we are in our minds is probably the most important thing to all humans as self image is the benchmark for so many other thing, damage it and you damage our entire world, in just one move. We are all self centered and selfish, we can’t help it, it is also called self preservation, so it’s OK you really can’t help feeling that way, but it still hurts.
It has taken time but I know happily ask for Adam to be my legs and fetch and carry, to be my cook and bottle washer, my housemaid and on occasion carer. I do feel guilty and I have to tell myself that it is OK but feelings aren’t logical and life is a bitch when it isn’t on your terms. I try hard not to disturb him when he is dosing on the settee, to interrupt his leisure time hobbies of surfing the web or lifting weight, I try but sometimes I have to. Acceptance that slowly my world is becoming out of my control is just that slow and I dread the day I have to ask him to take on more of my personal care other than my hair, this is the bit that the doctors never talk to you about, the bit that is hidden and the bit that hurts most.
I wish there was an answer as MS has battered my body and mind enough but all I can do is let it keep doing it, accept and put up with, make adjustments and tolerate, agree to and accept. I still don’t have to like it and it will never be easy.