More than just a bag lady

Looking back on my New Years Eve Facebook memories I spot a recurring theme. Each year I reflect on the shit time I’ve had with my health and hope that the coming new year will be better. But they never are. Every year my health seems to deteriorate and brings me a set of new challenges to deal with. But every single New Years Eve I hope that this will be the year where my luck will finally change. I continue to have hope because I honestly have to believe that one day things will get better. Things cannot always be this hard. But I’ve been thinking that for almost 14 years now and sometimes it’s tough to stay optimistic.  So what do I wish for in 2023? I would like to spend more time at home than in hospital this coming year- something I’ve not managed to do in the last 2 years. I want the immunosuppressant medication to work; for it to keep my bowel disease in remission and ultimately remove the need for any surgery. But if it doesn’t and I do need surgery then I hope that this w...

I’m currently in bed with a temperature, hacking cough and feeling like I’ve done 10 rounds with Mike Tyson. It would appear that I’ve succumbed to one of the many winter bugs doing the rounds which isn’t surprising given that 1) I’m immunocompromised and 2) both the kids have been poorly recently. To be honest it’s been a bit of a miracle that I’ve not been sick sooner. But despite knowing that the germs would eventually get me I’m still feeling rubbish and very, very sorry for myself!  The thing that does concern me is that if I get an infection then I cannot have my weekly injection and I’m worried that if I miss a dose then I will end up suffering with my bowels as a consequence. This comes on the back of my appointment earlier in the week with the community pain team where I sat there and told them I was the most well I had been for years! I obviously spoke too soon! I had a MDT (multi disciplinary team) meeting with their lead pharmacist and their occupational health/CBT spec...

What have I been up to the last couple of weeks? Living is the answer! I’ve been able to take the kids to school, do the food shop, have family dinners, see family and go out with friends. And it’s been bloody brilliant!  That’s not to say that everything has been hunky dory. I’m on a reducing dose of steroids and 10 days ago my dose reduced from 30mg to 25mg. Within 2 days I was in agony, going to the toilet all the time and passing blood. So I rang the IBD nurse, who spoke to my consultant and back up to 30mg I went. The plan now is to taper off the steroids really slowly so instead of reducing by 5mg every week the reduction will be every 3 weeks. Hopefully that will give my body time to adjust to being less reliant on the steroids and stop me from flaring when the doses get lower.  I think the adalimumab injections are definitely helping. Since being on these weekly I have felt soooo much better. But to get 5 good days a week I have to have 2 crap ones. I inject every Mond...