I was listening to the news this morning as I always do, when an article about MS and a new drug that has just been licensed in Scotland. I should have known before I even looked on Google that there would be some reason why this drug like so many others, would be of no use to me at all. It has happened time and time again, drugs appear and all too many of them are purely for relapse-remitting MS, so when I started to read and saw that it actually was for my type progressive relapsing my heart lifted and I set off to read the medical descriptions and research material. It can be a real minefield wading through all those medical terms and so on, but it really is the only place that you will find the full story, especially as most articles are written by reporters who either don’t have MS or even knows someone who has it. The first one I found was all statistics but held some hope that I might have found something to at least talk about with my doctor, then I found the hammer blow. I know this drug was an oral form of another treatment, I had presumed that meant it had previously been administrated by injection, I was wrong. Tecfidera, is an oral version of Mitoxantrone, known otherwise as Novantrone, a chemotherapy drug I have already had. You can’t be on this drug forever, when I had it, I had to go to hospital one day, every three months for two years. I sit in a chair and what a bright blue liquid which the Nursed set up, wearing more barrier clothing than I had ever seen anyone wear, apparently it can burn skin away, something nice to know as it courses through you. I was lucky the side effects were minor and to date it is the only treatment that has made a huge impact, I actually over those two years, started to get better, by the end of my course I was vastly improved in so many ways. Everyone around me saw the difference, I could think more clearly, talk without falling over every word and although not out of my wheelchair I was stronger. More importantly than any of those things, my rate of progression was slowed dramatically, if I hadn’t gone through with it, I know without a single doubt that I wouldn’t be writing this, as I wouldn’t be capable enough to even sit up unaided.
The hope of new treatments always seem to be dashed, this time because I have already had it in another form, but usually because it just won’t work on my form of MS. Only 5% of people in the world who have MS have PRMS, we are a select little group who are unfortunately at the bottom of the list when it comes to research, but as once said to me it also means that unlike others “we don’t spend our lives taking drugs with horrid side effects.” I asked a few years ago if there was any chance that in the future they could repeat the treatment, but I was given a total no, the damage it does to both your heart and lungs means they just won’t allow it more than once, add in that I now have COPD and well the proverbial “snowball in hell” comes to mind.
I find myself today just as lost as I was yesterday, the whole of the day passed me by without managing to bring any sense to my feelings, I just hoped that when I woke this morning that I would feel more like myself, a hope that hasn’t come true. Even Adam was concerned about me when he came home for lunch and again when he came home in the evening, questioning me as he could see clearly that I am just not right, to the point he said I looked really ill. It can be hard sometimes to convince him that I can manage, despite how ill I look or how bad he thinks things are, there really is no point him staying at home. As long as I can manage the short trips to the kitchen and bathroom, then I can manage. We both know all to well there will be a point when I will need more help but I am not going to call for help until I really have no option.
Although Adam like many, many people may not really love his job, I see it as so important that he continues to work. Just having a job and getting out of the house and away from worrying all the time about what will happen to me next, is keeping him sane and settled. No matter what he thinks, his working and living away from me gives me peace of mind about him. We all need that grounding and contact with the world, time with other people and being responsible for something else other than our home lives, he is not the sort of person who would cope well if locked indoors forever. I honestly worry about the future, not just because of what I am facing but because of what he will be facing as well. I know he will take care of me, but in many ways I don’t want him to have to, I want him to still have a normal life, not one spent as a 24/7 carer. I can actually hear him standing here telling me that that is “his job, to look after me”, he has said that often but it doesn’t matter how many times I hear it, I will fight to keep his independence.
I doubt that those of us who are ill and those who live with us, will ever totally agree as to what and when that point of care kicks in. Both sides are acting out of love and both sides are caring for each other, it’s that caring and love that keeps us together but it also means we are constantly at odds with each other. I know that Adam doesn’t think I am as capable as I say I am to be here alone, there is nothing that I can say that will ever convince him otherwise. I love him for it, but his constant checking is also annoying, especially when I have to say “I’m fine” 5 or 6 times before he grudgingly accepts I don’t want his help, or need him to stay at home with me. I also understand why he questions and questions but there is one fact that he misses, I don’t know until it happens, that I need help. I can’t sit here and say well stay at home as I am going to fall later and be stuck on the floor, that could happen with him here or not. Illness doesn’t play by a rulebook, what happens, but until the day that it has totally won the battle of taking away my independence, I want him to also have his. It will always be a hard balance, but love has taken us this far and I am sure it will take us through the rest of this madness, just spare a thought for those who just want to care.
Please read my blog from 2 years ago today – 11/03/12 – Breakthrough
I’m not clear but I am sure that this flare has reached it limits. Yesterday evening I found that I could, at last, relax into the spasms rather than be gripped in agony. I know that sounds a little odd to anyone who hasn’t been through pain of this nature but I can probably at best equate it to labor pains and being taught to go with the pain, breathing and letting it happen rather than tensing and fighting it. When the spasms are bad you can’t do that, the pain and tightness of the cramp just throw the surrounding area into tensed knots that set solid, forming a wall around the spasm core…….