OK well I have drugs obviously but my first subject this week is the programme where a doctor is trying to get patients to give up medication. OK so I get that it works in certain circumstances and has in one on the programme. But for people like me he just tries to shame you. He even called someone’s medication cupboard the ‘cupboard of shame’. I get his point and given my circumstances I am probably very over sensitive about it. But as someone who probably shared his opinion a few years ago I have learnt the hard way that sometimes incredibly strong drugs are the only option. I have to take drugs that are incredibly harmful just to try and have some quality of life. I remember it shocked me when I first started on the chemo drug. When the pharmacy count it out they are only allowed to be exposed to it for a certain amount of time. And I was swallowing them!! Even the fact that some of my drugs are called biologics!!
I have had many people tell me that if I go vegan, gluten free etc then I will be cured. Well actually….no I won’t. I have an intolerance to dairy but nothing else. And anyone who claims to have been cured should contact the medical journals immediately given that this is incurable. Even remission for us isn’t like the remission more well known for cancer. With cancer it means you are cancer free and after so long you are no longer a cancer sufferer and your risks decease. For us it means the meds are doing their job. But a relapse is inevitable and you still have to live with the side effects of the horrific meds that keep you in remission. And not forgetting any of the disabilities that the illness has already caused. Currently I have no hope of remission. I just wish sometimes autoimmune disease recieved more awareness. I constantly get the ‘ooh you’re too young for arthritis’ or the ‘ooh I have it in my little finger from when I broke it so I know how you feel’. No……you really don’t ha.
So for a few reasons I had to wear an oxygen and heart monitor over night last week. This was not a fun night. It fit on my wrist then the sensor went on my finger. Did I mention I sleep with my head on my wrist ha. And it kept my wrist and finger completely straight all night which left me in agony the next day. On the plus side I looked like ET which was fun.
Still awaiting the results.
Feeling very organised at the minute. I have two elves which santa has already sent for elf on the shelf hidden in our room. And ordered the kids Halloween outfits today. We have bumblebee from transformers and poison ivy.
I attend uni for the first time on Saturday and am very excited to meet my tutor and others on the course. I am studying through open uni so I only need to go a few times a year. I just aren’t sure what time they finish and once I start work the times might clash but I hope not.
I have really struggled with illness this week. I have an ear, throat and gland infection so have been really lazy and the diet has frankly gone tits up. But tomorrow I am determined to loads up on painkillers and get my house tidied. Then Thursday it’s a uni day. I can’t go swimming until next week until the infections have cleared up. I went for my last swimming lesson for the time being though and wow it was hardcore. The instructor said that my swimming was great now and am feeling a lot more confident so he did it as a personal training session. Who knew swimming could be so hard ha. So am doing interval training now. Doing 2 lengths as sprints and then a break. Am excited to get back as starting to really enjoy it and feeling like I am actually working hard and getting some fitness back.
I do have an appointment with my favourite doctor on Thursday though about changing pain meds. I think sometimes Rob forgets how much pain I am in as believe it or not I never moan about it. I just try to get on with things as life doesn’t stop. But it stopped Sunday night. I just sat and cried for two hours as the pain was just relentless. I think it was a wake up call for me and Rob I guess as I just try and push through it and sometimes it is just too much.
The kids helped with my injection today. All in preparation for flu jabs on the 8th. Most children can have the nasal vaccine and I feel like utter rubbish that my kids have to have the jabs. But the nasal must is a live vaccine and I simply can’t be around it. My best friend has even offered to keep her daughter away from me when she has hers but I should be protected by then. So today finley pressed the button on the injection pen and jess put the cotton wool on and did the plaster. They really are awesome.
Ooh saw a comiccon in Keighley today in March. Only £5 each so really not expecting much ha. But my little geeks are incredibly excited. Despite me not starting the job yet I will need to book that off. It’s rare I am well enough for days out now so am determined and will use my mobility scooter and not give a damn.
Anyway time to stop wittering for this week. If you got to this point then we’ll done! 🙂