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.
I know how you feel with the regrouping. I don’t suffer with chronic pain, but I do suffer with severe depressive disorder. Sometimes I have to put myself first and see where I am with things and then move forward from there. I was put forward for group therapy, they said at the time there was a 3 month waiting list, 5 months later and I am still waiting. In the 6 months this episode has been going on all I have had is monthly appointments to check my medication, nothing to actually help me cope, I’ve had to do that on my own. Like you, I am making myself go out, sitting at home on my own does me no good.
I love this post so much Anne, you are such an amazing lady with immense strength of spirit. Your plans, goals and challenges all sound like they will help you feel better mentally, it’s always good to have something to focus on. The retreat sounds like a great idea, I hope it gives you a real boost x
I’ve visited your blog several times but never read your story about your health until today. I admire your gumption to keep a ‘normal’ life and will keep you in my thoughts and prayers.
Hi Anne, so glad to have you with us in the monthly linkup again! Fully agree with how life with chronic illness feels like a neverending catching up on life! Also loved your interpretation of the prompts. Thanks for sharing!
Hi Anne, thanks for joining us again, and for sharing your take on this month’s prompts! Always good to hear from another point of view 🙂 I agree fully about how life with chronic illness feels like a constant lag and catching up on life.
I too am never bored alone at home, but need to get out more, and have been! It has been really good for me mentally, but I really need to balance that out with my health, too. The pain returns just too easily.
Wishing you a fab May! x
Hi Anne, I can see how life with a chronic illness means you are constantly playing catch up. I sort of feel this way with my mental health, although I know it’s not quite the same.
Its great that you have such a positive attitude towards life though, and I look forward to hearing more about your crochet projects xx
Thanks Raisie, very interesting read 🙂
Love your spirit, Anne, and think it’s right that you set short-term and long-term goals that keep you looking forward. #ABitOfEverything
Regrouping is definitely a common theme of chronic illness and I really find it difficult to know what to prioritise too! I agree with what you said on diet. I try to eat really well in order to boost my health and eating well absolutely helps with my mental health too. I hope the retreat is good and I hope your mental health improve. You are clearly a very strong person!
I like your boosting section, especially for your mental health #ABitofEverything
Hello, once again, Anne.
Another lovely blog post and brilliant use of the prompts for this month. I loved your perspective on how chronic illness feels like a never-ending catch up on life! It’s so true, isn’t it?
I loved how you’ve set yourself a goal of getting out of the house at least once a week, it’s such a great idea and I know myself that when I do so, it makes me feel so much better mentally and appreciate a change of scenery!
Best wishes for the rest of the month
Hello Anne!! I enjoyed reading your post! Hoping with you that you get approved for the rituximab treatment.
I do fall behind sometimes. It seems for me to be certain months of the year where I fall behind because I get so busy during those months. But I do hope you are able to get back on track with your health. That’s so important! I like your grouping of how to do that. #abitofeverything
Oh, what fun to be doing some redecorating~ I also love changing or updating my home. I hope you enjoy the results 🙂
I love the end result, not so much the work and mess while doing it 🙂