So I was so excited for Christmas this year. First time we didn’t have money worries and first one I have had where not working and could spend it with the kids. But it was so hard. I hadn’t banked on that. Chronic illnesses are cruel. You have the opportunity to do something but your body stops you.
Am laid in bed watching a film alone. Rob has taken kids to his parents but I just didn’t have the energy. Felt awful as jess wanted to stay with me but I just wanted to sleep and told her she had to go. I treated myself to a laptop for Christmas, haven’t even used it as have no energy.
In fairness Christmas started badly. On Christmas Eve as the kids were going to bed I collapsed and was sick so Rob had to do everything. Christmas day I just about managed. But probably pushed too far as boxing day was so hard. Went to my sisters and fell asleep. I was anxious as there is a lot of flooding near us at the minute. Truly devastating flooding which has destroyed homes and businesses. But all I could worry about was getting home. We have 3 routes there as it’s 7 miles from home. Two routes were flooded. The third was clear but was a flood risk. Basically we have to cross the river somehow. I hadn’t realised how bad it was until we saw the flooding and how close we were to not getting there. Anxiety set in then. We were 7 miles away from morphine. A pretty scary thought. I am on high doses at the minute. I can reduce them when things improve a little but if I hadn’t have got home that night I would have started in withdrawal. I am putting emergency doses in my car from now on.
Yesterday we went to a panto. It was good but sitting for that long is a real issue and yet again I was exhausted and fell asleep.
I feel like I haven’t got enough energy to enjoy anything. We have been out a little today. Went shopping on my mobility scooter. That’s good at least. It means I can do things. But even that is exhausting which is insane. I haven’t got back on my diet yet cos I haven’t cooked since Christmas day. I haven’t binged at all though which really proud of actually. If I gain this week it’s not the end of the world but I really didn’t want to.
So the Christmas I had such high hopes for was disappointing. I feel like a rubbish wife, mum, friend……..well everything. I am due to have surgery on my shoulder on the 8th January then I have my consultant the week after. I am going to write my problems down so I don’t forget anything. See if he has any other ideas. I know pregabalin, gabapentin and humira are all drugs which have all been suggested before. The humira is part of a group of biologic drugs but we have to meet the local nhs’s criteria to start on them as they are very expensive drugs. The first two treat the nervous system. All come with more side effects. All trial and error sadly.
Thats my moan over and done with. I really hope everyone reading has had a fantastic Christmas x