I generally write up a post each month about my chronic illness for those that wish to know how I’m getting on. I often join in with Sheryl’s writing prompts but she’s been too busy recently to do them with the Christmas Season upon us. So I’m doing my own Chronic illness write up post
I didn’t do a post in November, it wasn’t a good month mostly. I was really feeling the pain as my treatments wear off. I’d had a telephone appointment with my consultant and he is trying to get my treatments changed so that I will have slightly less (3 days instead of 5) but more frequently (every 6 weeks instead of 12) He thinks this will help balance out that awful downward swing I have towards the end of my 3 months. I currently have IV Immunoglobulins but I have asked (repeatedly) to try Rituximab. My consultant doesn’t seem to think that he would get approval for the drug for my condition. I talk to others with my condition and there are few people in this Country who have Rituximab and find it really helps, and there are many more in other Countries that have both IVIG and Rituximab. I know I shouldn’t hold on to a drug for help, but there isn’t much else that can be done, and I do still have hope that there is something out there that will help me.
I became quite depressed during November, I couldn’t even think about Christmas. The girls had asked for specific presents so I bought them early to ease the worry. By the end of the month I’d somehow managed to buy 90% of my presents, but I felt like I was just making sure that people would get their gifts even if I wasn’t here to give them. Yes, I felt that bad.
Then my birthday came at the end of the month. I wasn’t looking forward to it. I wasn’t looking forward full stop. But my Brother and Sister-in-law brought my niece and her gorgeous little baby around to visit. Oh my, he is so munchable. It really cheered me up. Then on my birthday my friend visited and my family were lovely, showering me with gifts and kindness. I even had some lovely flowers delivered from my lovely friend Kim. We had a lovely take out for dinner (Japanese) and played games together. The following morning we had snow in the garden. I still get a bit excited about snow, The Little Man went out to play a little, but there wasn’t much so no snowman.
Then the snow cleared and we went to see the lights being turned on at the village Christmas tree and listened to the Carillon play Christmas songs. We were not out long, it was too cold and crowded. But it was magical for a few moments and my spirit was lifted.
Last weekend Graham helped me put the Christmas Tree up and decorate the house. I was worried I wouldn’t be able to do it this year but I didn’t really have to do much and now my house looks the part.
Then it was December and today (6th) I start my weeks treatment. I don’t want to sit in the hospital every day all week, but I’ll do it and it will pass and I’m hoping I’ll have no side effects. I may even begin to look forward to Christmas! We won’t be having parties or going out. The kids are too old for Father Christmas (I still believe) but we do Christmas our way. We will have Graham’s Mum over for lunch one day, and I will visit my family in the cemetery on Christmas Eve. I might leave the kids at home and see if I can get Graham to come to church with me for the crib service. (The kid’s feel awkward now they are older, but I love it.) The church where my family are buried is over 200 years old and it’s so lovely.
Stiff Person Syndrome and Other Ailments
So, the nitty gritty. I’m getting worse I know, my balance is worse, my pain is worse, my stiffness is worse. I do seem to have had less seizures lately but they haven’t stopped. I had one yesterday morning which was pretty awful but I was in bed so I guess the best place. I had curled up somehow though and my chest felt crushed making breathing difficult, but I didn’t panic, I breathed slowly and managed to move my legs which caused incredible pain and cramp, but released my chest so I could breathe. Staying calm is the key, everything is ten times worse if I panic. I lay there for another half hour trying to focus on relaxing each of my muscles until I felt I could move and pull myself up into a sitting position using my bed rail. Once I was up and moving I felt a little better. I was in pain, but I was alive and moving.
I’ve been getting some awful stomach pains and I’ve lost my appetite. When I do eat I feel full really quickly and then sick. I had some other symptoms so I called the GP who asked me to go in for a face to face appointment and examination. Then I had to go back for some tests and I’m waiting on the results. I don’t know what’s wrong with me so I’m not going to speculate I’ll just have to wait for the results. I’m just happy that the GP was so helpful. I was given some Lansoprazole which have been helping a little.
I just have to get through this week and then I can start wrapping my Christmas presents and fill up my online Christmas food trolley (which is already booked, and turkey ordered ready to pick up Christmas week.)
I do feel I’m on an upward trend. Last month I’d have said bah humbug to Christmas but now I’m actually looking forward to it. (and I know what my eldest daughter has bought me and it’s something I’ve been wanting for about 6 years!)
Here’s some photos of the things that lifted me up these past few weeks.
10 Facts about my Chronic Illness