Hey, so, here goes!! I’m a 36 year old mum of 2 and I’m also a nurse working for the nhs. At the age of 29 I was diagnosed with multiple sclerosis. At the time of diagnosis I thought my life was over, throughout my nursing career I had only ever looked after people with primary progressive ms who relied on the use of wheelchairs and carers 24/7, I imagined this would be me immediately! Thankfully It wasn’t as for the time being I have the relapsing remitting form which comes and goes and so for the most part have managed to let it not affect me too much! Until recently I still lead a relatively normal life, I work full time and don’t rely on anyone else to help with my kids or anything, I get very tired from time to time and will probably have 1-2 flare ups of the ms a year where I struggle to get around for a few days or so. The treatments I have had for my ms so far have been a drug called copaxone which I injected myself every day but unfortunately I had a reaction to, the other was called cladribine which is a low dose chemotherapy drug. The cladribine worked well and I have been doing great for a while however one of the side effects is higher risk of cancer which unfortunately that actually happened and since I have been diagnosed with cervical cancer. The cancer is grade 1 which is easily treatable thank goodness, I have just had surgery and am awaiting the all clear! (Fingers crossed! 🤞) however with the stress of everything aswell as family losses, financial worries with being off work sick etc I am concerned that my ms is rearing it’s ugly head! I had an mri scan which confirmed new active lesions on my brain and spine and the only other thing they are suggesting is another round of the cladribine which obviously I really don’t want to have because of the cancer issue. The best treatment available for relapsing remitting ms is something called HSCT here is some info about it
https://www.mssociety.org.uk/about-ms/treatments-and-therapies/disease-modifying-therapies/hsct
it pretty much reboots the immune system so your body can build healthy cells. Unfortunately because I have had a first line treatment (the cladribine) it’s unavailable to me on the nhs and the cost is astronomical (approx £80,000) so I have no choice other than to fundraise as much as I can to attempt to pay for it. I don’t have family who are able to help out and obviously with being off work sick cannot afford to save up to pay myself, to be honest on a nhs nurses wage even if I hadn’t been sick I probably still couldn’t afford it but that’s another story!! All I want is to be able to stay as I am and not keep getting worse, I want to keep being able to bring up my children, go to work, carry on nursing and caring for people. I’m not the type of person who likes to sit around doing nothing and I’m PETRIFIED that my illness is going to get me to the point I can’t continue my work and look after my babies. Thanks for taking the time to read this, even if you got this far down my novel! I’ll be truly grateful for whatever anyone puts towards this, if anything! To be honest it’s just been nice to vent and get it all off my chest! X
https://paypal.me/mseden07?country.x=GB&locale.x=en_GB