I was adamant at the start of this week that I would be having the Summer off to think about my interferons options and give myself just a few more months without having to think about injecting or side effects or MS at all, perhaps I could just bury my head for a little longer. I have just made a phone call to order the once weekly injectable drug in a bizarre turn of events. I had an appointment with my nurse today who is so lovely and not pushy at all, we had a good long chat about all the options (after I had a good cry – again- that I just cannot run as fast as I used to) and she showed me all the different auto injectors and went through how to use them all. It turns out that the once weekly one is only a teeny bit bigger than the thrice weekly one and I may only feel rubbish for a day a week rather than three. She also showed me a computerised option which already started playing up even with a professional using it , no chance of that option for me. I want some control. I think the other thing that sold it was as many people get the side effects as don’t get any side effects so I am hoping I will fall into that category as I will never know if I don’t at least try. The hardest thing is that no-one can ever know at what rate the relapses would happen if you didn’t have the drugs as opposed to having the drugs as unless you have an identical self who you leave without the drug to compare to yourself who does have the drug to do a direct comparison you will never know. It is another gamble in life. The hair loss thing it seems may not be too noticeable, just extra coming out in the hairbrush, in my mind I was going to be sat there with a few wisps of hair left!
So on the way back in the car, me and Rob decided it is worth a try, he is happy to “stab me” for the first few times until I feel able to do it myself. I had also read an article that the earlier you start these types of drugs the better before any cognitive impairment sets in. The cognitive side is what concerns me the most along with the lesion on the respiratory centre thing (in my case) too but I just cannot think about that at the moment. So that was it, decision made, I rang my order in and in a few weeks time I will need a sharps box! At least it comes through the NHS and not on a prescription as I don’t qualify for help with prescriptions either. If I get horrendous side effects I just stop using it.
The other encouraging thing as well is that I discussed my difficulty coming to terms with this on a daily basis and actually accepting that this is happening to me. Surely I should be just getting on with things now? Not so it would seem that it does take time, a lot longer than I was expecting it to take, it was nice to be almost given permission to not be just getting on with it yet.
Positive thought: be gentle with yourself