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 specialist and the last time I had seen them was before covid when I was still on the fentanyl patches and all the other pain meds that I managed to come off early in 2021. They were obviously pleased that I was no longer on whacking great doses of opiates and I think a bit shocked at what a good place I was in physically and mentally.
Like my gastro consultant had pointed out a couple of weeks earlier, the pharmacist told me that it was difficult to know whether it was the adalimumab or the steroids that were making me well at the minute and that being on steroids is known to help with pain. He suggested that maybe staying on a low dose of steroids long term might be good way of managing my pain and would probably be better for me than having to take big doses of sevredol or morphine. Obviously it would have risks but it could also help to keep the crohns at bay too so could be a win-win. At the moment I’m on a decreasing dose of steroids and I’m down to 25mg a day and his suggestion was that 10mg would be a good long term dose. To be honest, I’m willing to do anything to keep the pain and bowel disease under control, even if it means that I will have the steroid ‘moon face’ for longer.
Christmas is right around the corner and although I’m feeling poorly from this bug, it’s the first year in a long time I’m not laid up in bed from the bowel disease. The last two christmas’ I was so poorly I only managed to come downstairs to watch the kids open their presents and then was straight back up to bed and then I ended up in hospital not long after Christmas. I did have a panic a few nights ago that I would need to go into hospital as my bowels went into overdrive; I had awful diahorrea, was in agony and then started to be violently sick. But I really didn’t fancy a trip to A&E when there was a nurse strike followed by the ambulance strike as I thought it would be absolute carnage. (I do fully support the nurses and ambulance staff striking but that’s a whole other blog post!) So I rode it out at home and it turns out that it was the start of this awful bug. I think Hubby wanted to take me in to get checked out but I knew it wasn’t an obstruction- bizarrely my vomit tastes different when I’m obstructing to when I’m just regular ill. I guess I’m just so in tune with my body now I can notice these subtle differences.
I think that because I’ve been so well recently being unwell has hit me harder. It’s strange to spend days in bed just watching tv when I’m now used to being well enough to go out and do stuff. I can hardly believe that this is how I spent weeks and months of my life before. I think I’ve done more living these last 6 weeks than I have in the last 2 years. I’m determined to say yes to things if I’m having a good day and I’ve managed to have lots quality time with Hubby and the kids, been out with the school mums, had family round to celebrate birthdays and Christmas, been to a Carol service, taken Big Girl out on driving lessons, been to a gig, watched both the kids play sport and just do all the other boring ‘mum’ stuff that you take for granted when you’re well. I’m just hoping to bounce back from this bug relatively quickly so I can get on with living some more.
Luckily we are going to my parents on Christmas Day for lunch and then we are at the in-laws on Boxing Day so I won’t really have to do any cooking. I’m looking forward to going to the cinema with my sister to see the new Whitney Houston movie on the 27th and hopefully being well enough to catch up with some friends while they’re off work. But mostly I’m looking forward to being around this Christmas and not in bed and to be able to do stuff with Hubby and the kids, even if it’s just snuggling on the sofa watching a movie.
One tradition that I have managed to take part in this year was Christmas Eve bowling with my bestie and her family.
I know what you’re thinking- it’s the 23rd December, how can you have been bowling on Christmas Eve already? Well Christmas Eve bowling is no longer on Christmas Eve. It started out on Christmas Eve many, many years ago as a way of keeping the kids entertained, especially if one of us parents was working. But since we moved back to Nottingham doing it on Christmas Eve was too much, especially for bestie with her having the little kids, so now we just do it some time in December. It’s getting harder and harder each year to arrange a date that suits everyone especially as the older kids grow up and have jobs and busy social lives. Maybe in years to come the big kids will get too busy to join us and then the little kids will grow up too and then eventually it will just be me and Hubby and bestie and her Hubby but it’s something that we are determined to keep doing for as long as possible.
The other thing I’ve done is to try and lay my hands on a specific polar bear toy for a friend in Belfast. Last year when Big Fella wanted an Xbox for Christmas and they were like gold dust, my friend managed to get one for me and send it over from Northern Ireland. So when she message me and asked if I could return the favour of course I said yes. She had promised her grandaughter this polar bear toy from Card Factory but forgot to buy it and when she remembered they had sold out. So she asked if I could look in the stores in Nottingham. I looked in the two local ones but they didn’t have them so then I decided to ring every Card Factory store within a 25 mile radius. None of them had it in stock but one store did have an extra large version of it so I asked them to put it to one side. I rang my friend to proudly tell her I had gotten my hands on a reindeer for her, only for her to remind me that I was supposed to be looking for a polar bear! Turns out I had rung around 20 stores asking all of them if they had the reindeer soft toy in stock instead of the polar bear. In the words of my friend “what a twat”. So I then had to spend the next hour ringing them all back asking if they had the polar bear. Turns out none of them did. But at least I tried!
The other thing I’ve spent ages on the phone trying to sort out these last few weeks is travel insurance. We are hoping to go away to Spain or someone else in Europe next year for the first time in years. One of the reasons we tend to holiday in the UK is the logistics of packing up and transporting all my medical supplies; the other is getting travel insurance. I didn’t even bother with ‘normal’ travel insurance companies- I went straight to those specialist ones that cover people with pre existing medical conditions. But it turns out that having multiple hospital admissions and being on the waiting list for surgery makes me a risky bet when it comes to insurance and the first company I tried wouldn’t even insure me! The second want to charge me nearly £1000 for a weeks insurance! And to make matters worse I have to call each company as when I try to complete the medical questions online I get the ‘computer says no’ error message! So I have to go through all my health issues with a call centre operator that has never heard of them, let alone knows how to spell them! Each of the two phone calls has lasted between 60 and 90 minutes and at the end of it I’m physically and emotionally exhausted. There’s a couple of other companies I can try but I need to prepare myself to have those conversations again. I’m hoping I will be able to find cheaper cover because at this rate my insurance will cost more than the price of me going on holiday! But there no way I could leave the country without insurance as it would be just my luck to get ill and need flying home and they would cost thousands and probably bloody bankrupt us!
So that’s been my December so far. I wish you all a very Merry Christmas and a happy and healthy new year. Here’s to 2023 being a good one!
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