Monday, March 18, 2019

160 hours to go

Seven Days post treatment

This time next week I would have been at the M.S. clinic for nearly eight hours already. This has come up so fast.  I have been so busy with work and other things this has really crept up on me. A part of me is dreading this. My anxiety levels have slowly crept up on this along with the treatment. A few weeks ago, I was fine. I was thinking 'I've got this'. Now it's less than a week away and my nerves have started to fray. It probably hasn't been helped by the fact I am no longer on any medication for the M.S. 

Yesterday I started on the CBD oil. Cannabis oil, which you can get at the Health Food shops in the UK. Without the bad stuff (or good stuff, some would say) in it. I don't feel any different, but today the fatigue isn't the same as it usually is. So I am hoping it is helping. It's put me out of synch, not having the twice daily pill. 

Trying to organise the next eight weeks for work and my travel, has been tough this morning. I am convinced I am going to be okay after the first couple of weeks. I know this is restarting my immune system. I know I am going be tired the first week after. The week after that I am planning on being back at my desk, working. I am lucky enough to work from home, which I have in my favour, recovery wise. I won't need to leave the house. I can recover at my desk for the following three weeks. Then I am back to travelling at the end of April. I will spend Easter at home. I worry I am pushing it, knowing the effects I could possibly suffer. At the same time, I feel if I start to worry and think like this, I will suffer. Power of positive thinking. I can do this. I will do this. If not, I will do what I have always done. I will push through it. I may complain a little bit, mainly to Tony and any friend and family who will listen. You can't tell me to suck it up, I have a really good excuse. 😅


It only dawned on me over the weekend (while stocking up on snacks and breakfast items), I am not paying for this. It is all part of the NHS and the care it provides for tax payers. As much as the NHS gets a bad reputation with the amount of red tape you have to get through to be in the system. Also the waiting lists and some forms of care, I can't in good conscience say anything bad about them. For the last three years I have been paying £16 every three months for my medication. Compare this to the $60 a month I was paying in Australia, and goodness knows what the cost is in New Zealand, America and other parts of the world. I am lucky I am having this treatment here. It is a good thing. I don't even want to contemplate how much it would have cost otherwise. Would I have paid for it? Would I have suffered through, continuing with the existing medication? It is not a question I have to answer, but is one I have thought of. What would my options have been? 

There are other drugs which can be taken for progressive M.S. After 15 years since my diagnosis, I am one of the lucky ones. I have been told this by a couple of neurologists and nurses. I haven't progressed as fast or as much as others. Most people who are diagnosed with this 'monster', by now, are a lot worse than I am. I think most of my diagnosis is hidden. I struggle with my walking a lot more now than I did, although I still don't use the cane I have as much as maybe I should. I do try to be in bed early, and have quiet weekends. It is the plan at least. Sometimes this doesn't happen.  Maybe it will tonight. 


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