Day I typing. Now it's 8 weeks after the operation and the mind is still not up to full power and balance is a big problem. I need to use both handrails to navigate the stairs both upwards and downwards, and walking on carpet with shoes or slippers on is virtually impossible. I tend to drag my right foot so footwear tends to stick to the carpet pile and makes me trip.
The appointment at the MS Clinic is still a couple of weeks away and I can't wait! Will medication make me feel better? Will I be classed as fit enough to have the low-dosage chemotherapy or will I be having to endure daily injections? Will I have had all the tests before Xmas for nothing, and have to endure them all again because of the time lapse?
Day 2 typing. The fatigue is making life so difficult that even typing this has been taking too much effort, hence the long delay. Add to that the other factors of family life and you have a perfect recipe for brain retirement, and mine has with no warning.
I have also had the first catheter change which wasn't as bad as I expected [that phrase seems to be my mantra!]. This first time was done at the hospital but future changes every couple of months will be done by the district nurses. So I will have that to look forward to.
Day 3 typing. There has been a 3 day gap and now I just about feel able to finish this. I went to the MS clinic yesterday and all the tests were worth it, the consultant told me which sort of MS it is. Are you ready for these long words? It is called - Aggressive; Secondary Progressive; Remitting, Relapsing MS. (SPRR) Basically, every relapse [which is happening now] will leave me a bit more disabled every time. So the consultant's aim is to stop the present relapse and therefore reduce the percentage of disability which I will be left with.
The only drawback is to the treatment is being a pincushion. First though there are the steroids, but before I take them I have to be infection free, so its to the docs with a urine sample and waiting for the results, then the 5 days worth of steroids which were wonderful last time even if they did stop me sleeping. I felt normal, well whatever passes for normal in my case.
After the steroids I will be waiting for an appointment to have the type of chemotherapy [low dosage] the effects of which will be monitored by regular blood tests and, the consultant asked me. had I understood what the side effects were? I said I had, but being a glass half full type of person, I didn't mention to him that I had only skimmed them, I have read them fully since and if I believed that bad things happen to me I would be worried. It can cause hair loss, heart damage and liver damage aswell as discolouring the urine. But lets not dwell on those. what is more frightening is that if neither this nor the follow up treatment of possibly daily injections don't stop the present relapse. I will be a permanent wheelchair user in about 12 months time. [Well that's better than colliding with the ground, or at least threatening to, on a regular basis like now].
So at the moment I am feeling a mixture of emotions and very edgy. Thank goodness that the plasterer who has been doing some work in the house on behalf of the Housing Department was not a 'jobsworth', I was in no mood for anybody to say 'cannot do this because of …..................' In fact I don't feel like being a nice person at moment it takes too much effort, so I apologise to anyone [especially Alan and the dog} that I may offend until my mind is more rational.
