I think when it comes to my health I am regrouping things all the time, it’s always a game of catch up. It’s hard sometimes to prioritise so things go astray, but occasionally I have to regroup and get it all back together again. I guess it’s the same for everyone, we all fall behind at times. But when you have a chronic illness it seems that regrouping things together again is a constant theme.
In the last month I have been regrouping my appointment letters and getting my calendar up to date. It seems a lot has been going on with me, Star and the Little Man.
At the hospital last week I arrived on the ward to find two other Stiff Person Syndrome sufferers. Of course, my seat was right in the middle. The one female I see every three months when our treatment coincides, but I don’t have much contact in-between apart from the occasional text. The other Man I met on our Facebook support group and I’ve met him at the hospital once before.
It’s kind of strange how we all have the same condition but are all so very different. The female has had SPS for a long time and the treatment is working well for her, plus she has a fighting spirit and won’t let it beat her down.
The man is older and has other conditions, but still he can walk and drive whereas I can’t. But, then I do have a specific form of the condition which makes it worse for me. My bad luck!
Back to the Investigating. We asked the nurse about some treatments we had heard about and he gave us the full run down. I won’t bore you with the specifics, but it’s so different reading up on things like stem cell transplant or Rituximab on the Internet, than it is listening from the medical profession. In particular one who has experience in experimental treatments.
The long and short of my investigations are; I’ll not even try for stem cell transplant unless it’s my last hope. But I will see if my consultant manages to get funding for Rituximab. However, having heard how expensive it is I’m not holding out much hope.
I am always trying to boost my health with my diet. After all, what you put in makes such a big effect on how your body reacts. But the other big thing is boosting your mental health.
Mine has taken a big dip in the recent months, but I really want to try and make things better again. I have a lovely retreat planned in a couple of weeks which will give me a boost, both in confidence and mental health.
I’m also exploring ways of increasing social activity because I know that sitting home most days is not doing me any favours. I don’t mind being alone, I have plenty to keep me occupied, but there is something about getting outside of the house, or just interacting with others that gives me a boost.
Last month I set myself a goal of getting out of the house once a week which I’ve kept to, often going out more than once.
I like setting goals and I’ve a few crochet ones that I have for May. I’ve also set myself a goal of reading/listening to four books this month.
As I do spend a lot of time at home I think it’s time to revive the tired decor. In particular the living room. I have just to wait for someone to actually do the work now, and I’m hoping it will be real soon. Then I can order my new carpet.
I’m also hoping to get my bathroom revived, or rather re-structured as a wet room. We have a family room upstairs but the downstairs shower room is the one I have targeted. A wet room would make my life so much easier and safer.
So that’s my interpretations on the prompts this month from A Chronic Voice Blog written by the lovely Sheryl.
You can read my writing prompts for April here.