I’ve had an interesting few weeks, as some of you may have read.
My dad, who has never been diagnosed with much (or maybe he did - apparently someone offered him MTX and he said no), died a couple of weeks ago.
And since I was a kid, I was the only one in the family who really thought there was some substance to his winges about sore muscles and a bad tummy (which had turned into at least a shoulder joint almost fused, and then anal fistulas).
The hard thing was that he was clearly using it to be manipulative - so mum and my sisters understandably dismissed everything.
I always felt that there was probably something, but he was just overly utilizing it to his advantage.
Now my family wants to put any illness of mine at arms length from him - because I tend not to winge or manipulate - and I find it very hard, because regardless of the winging or manipulation, he was such a happy, vibrant person before the illness, and after having the experience, I now know how the change to the life he ended up having wasn’t a choice.
With the new diagnosis for me of probable Crohn’s, mum and sister are very freaked out - but I can’t really suggest dad might have had it (regardless of fistulas etc), because the emotional burden for them of the idea that he had it, and they didn’t believe it for so many years would just be too hard.
But it’s also very difficult for me, because whilst I I’m not the manipulative type, I do feel a bit exposed having disease(s) that makes me so exhausted,.
Most days, when I’m having a flare (joints or tummy), pretty much all the time, I struggle to be the loving, happy mum that I have the right to be.
Right now, the inflammation has decided to increase. Even though Humira should be a week away, the tips of my fingers have started to go numb…
Crohn’s has this huge loading dose, and I only took half of that, so maybe I’ll chase that up