Last night I actually managed to stay up until 10 pm, it was the first time for weeks, I’m not sure what made the difference but I was really glad for once to not be running away and leaving Adam just sitting there by himself. The simplest things make you feel guilty when it is out of your control. No matter how I try those are the feelings that I have never managed to get under control, the guilt of not being able to have the life that you and your partner thought was ahead of us and now because of something you can’t do anything about, it has all gone. Once I had been through all the other emotions that having an illness like MS has attached to it, guilt is the one that even 11 years on from diagnosis still manages to pop up all the time. Not being able to work is the thing I feel most guilty about as we have lost a good standard of living to a limited one. If I was fit and healthy I would still be earning a good income and we wouldn’t worry constantly about the bills and the mortgage. I’m not saying it is a feeling that is there every second of the day but it is there and it is an unwanted pain in the neck.
Strangely my lungs were filled again this morning but the worst they have been yet, but when I stopped coughing I actually fell better than yesterday, and my MS knows it too. Spasms in my left shin and tingles in both hands. I hate tingles they are like mild pins and needles but they make you want to scratch but there is nothing that needs scratched, and it does nothing to help either. I remember for years telling my doctor that my whole body was itchy, he of course looked at my skin and there was nothing to see. I am sure it is little things like that that slow down diagnosis, once again it is the use of the English language and explaining to a medic using none medical terms what is wrong. It has been one of those annoying things that of course as it is caused by my nerves, no matter how much I wash or add cream, there is that nasty tingly itchy feeling, some days it is everywhere but it’s favorite location is my hands and my chest and the top of my back, sometimes it has been so bad that I have woken in the morning and I have dots of blood on the sheets where I have scratched through my skin. Although it is one of the minor symptoms on the scale of symptoms. it is probably the one that is just the most simply annoying!
I know that unless there is a sudden change that I am also going to have to start self catheterizing again, I just simply haven’t emptied my bladder for several days and that is a invitation to bladder infections. Some of the MS medics have told me several times that I should do it all the time at least 3 time a day, but I really don’t need to, like many things you learn what you need and how to manage it. I know that one day that will be the final result and possibly more than 3 times a day, but I don’t see the point of putting my body through something it doesn’t need. If it has the ability to do what it is meant to do, even for a short time longer I really believe that I should at the very least allow it to. I have said many times that getting to know your illness is really important and this is very much one of those occasions. The Medical professions do there best to set out schedules that are for everyone, but many illnesses don’t hold to the perfect written descriptions. It takes a few years to learn what your body does and doesn’t do, what will make it easier to live with and what aggravates it but ultimately it is you who knows it best, convincing doctors of that is often a different story. When it comes to medications then you have to be more careful about adjusting things yourself but there are many things that you can play around with and find out what works best for you.