A new week and I hope a better one! I ate very little yesterday as I wanted to rest my stomach, but I am going back to normal today. Despite the trauma of Saturday night I am glad to say that the MST and I are now making friends, it’s taken a little time but friendships are rarely instant. I am now on my 3rd 12 hrs on 70mg and I no longer feel doped or bad pain, there is always some pain and I think it is unrealistic to expect total pain free results from any drug, after all show me the person who doesn’t have mild aches and pains.
The past 24hrs has once again proved to me that what I believe about getting to know your illness is essential to being able to live with it and move on with life. To me life with MS isn’t life with MS, it is just life, I know my MS and I know the difference to being ill on top of it. I felt the same on Saturday night as you would if you suddenly started vomiting, to try and explain this is a little hard as my view of healthy is skewed, actually that is the simplest way, I now simply see the daily effects of MS as healthy, so anything on top is ill. I guess that sounds a little nuts, but you have to remember my life is a little nuts. I was so drained last night that I had planned to go to bed really early but then pushed on an extra hour for two reasons, I didn’t feel I had seen Adam really this weekend and I had made the fatal mistake of watching a film, I have to say that is one of the things I don’t like with films, they are too long. A one hour program disrupts a short period of time a film disrupts everything, any way I made it to bed at 9:00 but even sleeping to the alarm today, I am still tireder than I should be so it may well be another short day.
How we view illness I think really is the truth behind how we deal with it. If you are a person who believes that you are dieing when you have a cold, I think you will be a person who will find it harder to adapt to a life of illness with independence. I never let illness stop me unless it was beyond my control, the only illness that stopped me as a child was Glandular Fever and as an adult Pneumonia, off hand other than the odd days of dealing with food poisoning and so on, I have kept going, working through it and on. Since MS got me, it has been a psychological adjustment at each stage that has hit me hardest rather than the physical ones, physically I have always pushed through, mentally it has taken longer.
On the flip side those who crave nursing when they have a minor bug, I think, are the ones who at first will feel far more than I did, that they have hit the end of everything. They are the ones I have met who have a need for some reason to tell everyone about their illness, at every turn, holding it up as a flag to the world saying be kind to me, I’m ill. Like the woman I met at the MS society meetings, who had to have it worse then others, and who claimed she couldn’t possibly work as MS wouldn’t let them. I am in no way putting these people down, I really believe they psychologically have no choice in their behavior and feelings, they are as honest about their illness as I am, the difference is I am preconditioned to keep going, just as they are to stop and need help. Truthfully I feel so sorry for them as they are missing so much, but I am not sure how to reach them and show them that any Chronic illness isn’t the end, until the end finally comes.
I find I am writing for more and more reasons, the more people that I meet who are going through their own personal fight with a huge range of illness, the more I feel I have to keep giving a voice not just to me but to them as well, not all have the ability to write for themselves and not all the health to. Around the world there are voices that aren’t heard or listened to, voices like mine, trying to find out what now and what next, what does something feel like, is it me is it my illness, am I going mad or is this to be expected. I can’t talk for all of them as I don’t luckily have all the illnesses, so I talk for me and I hope they find and echo of themselves. If you found yourself with something happening to you, something that is taking away the normality we all prize, then where do you turn and who will tell you the truth. That is all I can promise all those voices, I will tell the truth, where ever that take me and I will continue to shout at all who will listen.