I've mentioned before my wonderful family, I know they play a mahoosive part in the coping question, I really don't know where I'd be without them all, my husband is my rock, he's always there for me, and nothing is too much for him, my 3 children have naturally learned to help me, even the youngest who's 21 months old, he knows if I drop something, I can't always pick it up, so he does.
My 10 year old has helped since she was 2, on bad days, putting my feet in my clothes, then I stand up and she pulled them up then I do the rest!
That made me feel so bad, I kept apologising to her and thanking her, she never complains about it, she actually enjoys it, makes her feel special, and of course I always reward her, plus she goes to young Carers, which is great fun.
So its all down to my family that I cope, my support network are my family and friends,
One of the group of friends that I see regularly have children the same age as my youngest, and funnily enough also suffer with autoimmune diseases.
But we all understand each other, if we can't make it, we know why, we don't have to make an excuse, we just explain honestly and we all get it because we all "get" each other.
I regularly have bad times, and I don't get much warning, I either wake up and I can hardly move or it just comes on suddenly at any time of day, which is not good if we are out!
My legs have been particularly bad, I suddenly get pains in both legs all over, and sometimes I can catch it quick with pain killers & rest but other times it gets to the point where the pain killers don't touch it :(
And there's different kinds of pain I've noticed, I get burning pain (that'll be the fibro) I get muscular pain (that'll be the Sjogrens) and joint pain (that'll be the Rhumatiod arthritis) and because I've had so much pain, my nerves are damaged so I get nerve pain! (I know, when will it stop?!)
I found out about gabapentin and starting taking that, but the side effects were terrible, sickness, headache, tiredness........ So I was taken off them, then I found out about Pregablin, very similar but less side effects and more expensive, they were fab! I felt really good on them, and the pain was so much better, then I went for my monthly blood test and the gp told me my liver had gone mental 😠I couldn't believe it, I had to come off them, after more & more blood tests I decided my liver was in a permenant strop! Still is!
I was refered to a neurologist for investigation into IIH (idiopathic Intercrainial hypertension) which basically means I have pressure in my head, this is due to having too much cerebral spinal fluid, I've had an MRI which showed nothing, but that's good because it means I don't have a brain tumour, and recently I saw an ophthalmologist and had some eye drops put in to make my pupils dialate (man that stung!) if that wasn't enough torture, he then looked in my eyes with a really bright light that blinded me! I went home unable to see anything for a few hours! This is all normal routine,the next step is to be refered back to neurology for a lumbar puncture to see if that will ease the pressure in my head.
On a good note though, I've found out that the excruciating pain I get in my legs, shoulders & neck is known as Small Fibre Neuropathy, I don't know a great deal about it but I'm learning, it can also be triggered by the cold, now that I know that, I can keep warm and stay away from the freezer isles in the supermarket! No medication as yet (that's if the liver allows it!) but il keep you posted.
One day I will find the meds that help my symptoms, but that day is not today.
Charlie x
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