Yes it hurts, big time! Yes I can’t walk or use my hands well anymore. Yes it all swells up horribly – I have elephantitis! Yes we don’t sleep, night after night. Yes we are spoonless and end up having days in bed to recover. Yes we get fevers, rashes, flueyness, nausea, brain fog, and endless other things too! Yes we get horrible side-effects from the Meds – Cushing’s, high BP, nausea, addiction, cataracts and other even more frightening eye problems, osteo, high cholesterol, mood changes, spots, dry thin skin, bruises, hair loss, the list is endless…
But we’ve lived this way for years!
At first it feels like life has ended and we’ll never be happy again . When doing anything at all means days of rest and increased symptoms.
But then we change, something happens and we move on. We lose friends to our disease, we are told, in my case anyway, that the Meds they have aren’t changing things so are offered an alternative – for me a stem cell transplant – with horrible fatality odds. And so we change our perspective.
Live is much too short to give in! Having fun and being happy can happen, and it’s worth the bad days it causes.
There is no such word as can’t! I say this to my boys every time they give up too easily. Yep I ‘can’t’ walk, but I can use a wheelchair, so I can get around. Yep I ‘can’t’ do all that I’d like to, but I can do many things with the right gadgets and gizmos.
Yes I sometimes feel down and complain, but I fight it hugely! It doesn’t help, it doesn’t change anything, all it does is make things worse.
I plan to live everyday aiming for some fun and blowing my spoons on happy things . Even on those bed days it can still be fun – the view from the window, snuggling up with the dog, watching a funny film, planning fun for the good days.
However short my life ends up because of this disease, I will look back and know that I lived it to the best I could 👍
Keep fighting, keep smiling and most of all have FUN!