During the last week I have had two reasons to get all down in the dumps but I have decided not to let myself do it because it’s Christmas.
The first reason I could be feeling sorry for myself is because I suspect my Lupus has returned. The first signs of my Lupus appeared six or seven years ago but it wasn’t diagnosed for at least six months, by which time I was in a lot of pain. I have a form of Discoid Lupus, which is the non life-threatening type, although there’s a small chance that someone with Discoid Lupus could develop Systemic Lupus, which is life-threatening. I have Chilblain Lupus, which means because I have poor circulation I get chilblains on my fingers and toes and my immune system doesn’t fight them off because of the Lupus, instead it essential attacks itself, so the chilblains become red, inflamed and incredibly painful. So painful that if I brushed my toe up against something, not even a proper stub, I was nearly in tears. So painful that when I had it first time round I couldn’t open a bottle of squash even if the lid was on really loosely. So painful that once I was on medication people could tell the pain had gone because it wasn’t showing in my face anymore.
As well as the pain I also had a rash on my face which was sore, irritating and made me very self conscious. I was fortunate that this rash didn’t leave me with any scarring – the scarring on the singer Seal’s face is from Lupus. The only scarring I have is on my toes from some of the really bad chilblains and from the biopsy I had done to confirm the diagnosis of Lupus. Once I was diagnosed I also had the jokes about “it rarely being Lupus” from the TV programme House to politely laugh at. It was quite amusing first time, but then it became more annoying than people singing “Hey Jude” to me, although I’ve embraced that now – it’s my song! I also took medication that made me dizzy in hot temperatures, which wasn’t great when I used to run summer holiday activity schemes for young people, which didn’t give me much opportunity to sit down!
You can probably see why I would be concerned that it’s back. I know that I won’t get to the same level of pain again. The doctors know what it is now so I can get back on the medication if needed, although I have to be a certain weight to take one of the sets of tablets and as you’ll know if you’ve read my post Managing my Weight After Becoming a Mum, I’m a lot lighter now so may have problems there. I would also like a second child at some point in the not too distant future and depending on how long I have to be on the tablets for again, which aren’t recommended to be taken during pregnancy, that could scupper those plans for a while. Anyway, I think it’s a trip to the docs after Christmas and we will see what they say. In the spirit of being positive – I may be wrong!
The second reason is that there have been concerns about my little boy’s left kidney since I was pregnant with him. This meant extra scans during pregnancy, being highly vigilant for signs of urinary tract infections once he was born, antibiotics when he did have them and a few examinations and procedures at the hospital as well. I won’t go into too much detail as I plan to right an awareness raising post on this in the new year. I thought the procedure he had done in December would be his last for a while, but the phone conversation I had with the consultant yesterday meant I thought wrong. He has to go back in January for another test. I hate the thought of this. He’s my little boy and I don’t like putting him through these experiences that he finds so distressing, even though they are obviously necessary and for his long-term good.
The reason I am staying positive about this though, is that I know we are very lucky to have an essentially healthy little boy and even if the worst is wrong with this kidney, he only actually needs one. I am also aware there are so many people out there, including people I know, going through much worse than us, which is particularly sad at this time of year.
So for that reason, because it’s Christmas and there will be so many lovely moments to cherish over the next couple of weeks, with family and friends, I am being positive.
I hope you’ve all got something to be positive about too. Merry Christmas and Happy New Year everyone.