I always try to be positive, I’m definitely one of the cup is half full type people. Sometimes it’s not to my advantage as it makes me less likely to fight for more.
I’m not saying that I’m always happy, oh dear, definitely not. I can be pretty miserable sometimes, and I even get visited by the black dog of depression. But, I do tend to look at life through rose tinted glasses a lot of the time.
Now, last year was difficult being struck down by a debilitating illness that seemed to have come out of nowhere, plus dealing with a traumatic family death at the same time. The whole time I stayed positive because I was sure I was going to get well again, to walk again.
This year, I think the bad news hit me harder than I would ever expect. How can you spend a whole year feeling positive about getting well then suddenly be faced with the fact that you are only going to get worse. It was not what I wanted to hear. It was not what I wanted to deal with.
Then my consultant put me forward for some treatment that I’d heard could work wonders. I’d spoken (online) to others who had received it and were now walking again and leading relatively normal lives. It wasn’t a miracle cure, the treatment had to be taken regularly to keep working, but it sounded great and I was going to get it.
So, almost a month ago I spent every day for a week in hospital receiving Intravenous Immunoglobulin (IVIG.) I spoke to other’s on the same treatment in the hospital and they all had good things to say about it…but they all admitted that it didn’t start working until about the third round of treatment. At the end of my week I asked when I would be going back for my next round and was told that my consultant had not requested it. His instructions were that unless I showed significant improvement then there would be no more.
I was devastated, not only was I not showing significant improvement but I felt that I was not been given the chance to improve. Surely my consultant would know that one dose would not be enough. I could understand if I was refused if I’d shown no improvement after three treatments, but the consensus was that one was not enough.
I called my consultant’s secretary every day for a week, morning afternoon and early evening. Each time I called the phone would just ring out. I double checked that I had the right number. I did. I was so frustrated, I just wanted to talk to someone, I wanted to know when my consultant was planning on seeing me again as I don’t have an appointment.
I didn’t think I could feel any lower.
Then daughter became sick with chicken pox, then my youngest son caught it, and my other daughter, that was all the little ones. It’s ok, I thought, I’ve had chicken pox, I should be okay, so had my husband and my older children. I did worry for a while about shingles, but you can’t catch it from chicken pox, you can, however, catch chicken pox from shingles. I have an auto-immune disorder so I felt very vulnerable. Then my oldest son, 29, caught chicken pox and became really really sick. The rest of the adults in the house were extremely worried now.
Thankfully, no-one else has caught it and the afflicted are getting better. Then I heard from a friend in the know that vulnerable transplant patients are given IVIG if they come in contact with Chicken Pox. So, inadvertently I was given something that had protected me. So having the IVIG had been worth it after all, even though I may not have caught it anyway at least it has made me feel less worried.
So, now, after all we’ve been through in the past couple of weeks (And believe me, it’s been pretty hairy at times) I can forget about the stress of my treatment and not getting well. I’ll just take it in my stride. My consultant will see me when he’s ready and decide if I get any more IVIG or not.
I’ll focus on my silver linings, the IVIG probably helped prevent me from getting chicken pox and because I was able to try this new treatment it meant I was weaned off the steroids. I’m on a really low dose now and should be off them completely by the end of the week. I’ve already started losing some of the weight they made me put on and I don’t have a moon face anymore.
A few months ago I didn’t even know what IVIG was, I’m not going to let it, or the lack of it, stop me from getting on with my life. After all, a lot of people get used to not walking for lots of reasons, I’ll just have to accept my fate. At least I have a lovely new power chair to get around in…see, another silver lining!
I’ve decided that I have to regain my positivity. I may not get a miracle cure, I may not get treatment that makes me feel better. I know that I will get worse in time so I have to make the most of the time I’ve got. I need to stop dreaming that I will get better and just get on with things. This summer is going to be the best that me and my family have ever had. We are going to do loads and enjoy being together. I’m not going to worry about anything.
So what if I’m in a wheelchair! I’m breathing and living and my mind is well. There is still so much I can do so I won’t focus on what I can’t.