So, as I was awake last night vomiting again, I came to a conclusion.
I don’t do pregnancy well. Sure the payoff at the end is OH so worth it (bring on my baby!) but the journey? Not so fun.
And I blame a good portion of my pregnancy woes, not on pregnancy, but on my CFS and how it relates to my pregnancy.
I found out the other day that I’m not immune to Rubella (German Measles. Very dangerous for the baby if I catch it during pregnancy). This set alarm bells ringing in my head, because at last count I had been immunised for rubella 3 times. Once as a toddler, once when I was 12 and then for a final time at 16 – less than 4 years ago.
I knew my immune system was pretty bad, but I hadn’t realised that it was actually non-existent. Makes me wonder that there is something that all the blood tests that have been run (admittedly, prior to being pregnant) have missed.
Surely a disappearing immunity to a disease I was immunised against should raise questions markers for my doctor?
But the thing is, I don’t look sick. I might look tired sometimes, but generally, unless you know me quite well, I don’t look sick. I don’t talk about it outside of immediate family (Mum, Nan and Nathan) much.
When I was barely 13, my hip started to hurt. I couldn’t walk and I felt a little off. Tired and headachey and sick. Xrays showed nothing, blood tests showed nothing conclusive and yet, I was still sick. I couldn’t walk (6 weeks on crutches) and I couldn’t go to school.
My headaches continued, as did the tiredness, even after my hip was better enough to walk on. Funny though, after my hip got better, it was a steady stream of other joints/muscles putting up complaints.
I was so sick and exhausted, that I couldn’t brush my own hair. I needed help getting out of bed and I had NO hope of washing my own hair. I just couldn’t keep my arms above my head long enough to get anything done.
I was nauseous alot of the time and couldn’t eat much without wanting to vomit. I lived on pasta and salad for months. Doctors told Mum that I was ‘faking it’ and ‘anorexic’ because they couldn’t find anything else wrong. God knows I wasn’t either of those things.
It was the most frustrating 2 years of my life, trying to get a diagnosis and treatment.
After nothing was found in my bloods (except one slightly raised infection counter that is STILL raised, but not high enough for them to consider) and nothing was found on a CT, they diagnosed me with CFS, told me to exercise lightly and regularly, watch my diet and go home and cope.
That was almost 7 years ago.
I have been at home, coping, with no better diagnosis than CFS, for 7 years.
I still have days where I can’t eat. I still have the muscle aches and the joint pain and the overwhelming tiredness. Most of the time I can ignore it, but pregnancy aggravates all my symptoms terribly.
It’s silly, little things like stirring soup? Make my arms ache and I have to sit down. I can’t chop vegetables without resting. I can’t stand for long periods of time and I walk a very fine line between eating enough so that I don’t feel sick due to an empty stomach and not eating so much that my body revolts and I lose it all again. I don’t heal very fast or very well.
It’s hard, not that I am sick, because hell, I have been dealing with it for *this* long, I know that I am not going to lose my ability to cope, but because to other people, if I don’t look sick, it isn’t really happening.
That is the problem with auto-immune diseases (yes, CFS is considered an auto-immune disease. It is also only supposed to last 2-5 years before you recover), you don’t look sick. It’s even harder because even if you are visibly sick, it is an invisible illness.
The medical profession is very good at fixing obvious problems. A chest infection; an earache; a broken leg; but if your disease is hidden, you get thrown in the ‘too hard’ basket and left to cope.
The medical roundabout of trying to get a diagnosis is dizzying and frustrating, because of not looking sick.
To other people, I don’t look sick. Hell, sometimes I have a hard time convincing Nathan that I am having a bad day. My headaches don’t go away and something is generally aching at any given moment. But I don’t look sick.
And sometimes, I don’t know whether that is a curse or a blessing.
