Getting back to this week and normal service returns. Today I had to be at Kings between 9-9.30am for a hydrocortisone curve test. This involves taking a blood sample every hour for 6 hours. I was given a bed to be comfortable on. This was good as it meant I could have a nice snooze. I’ve been feeling exhausted lately. The other day I was in my mobility scooter wandering around IKEA with my partner and a friend. I was struck by this overwhelming tiredness. I could’ve just nodded off. My limbs felt so heavy and it was all I could do to keep my eyes open.
The lovely endocrine nurse that was doing my blood tests today explained that I should be taking more steroid during the day and not later or at night. She said the gap was too big and that’s why I was running out of energy.
This has highlighted a problem in the system. It was the haematologists that put me on the prednisone and hydrocortisone. They didn’t say about how to space the dose. I didn’t see an endocrinologist until a year later. They assumed I knew what I was doing by then and didn’t give me any info. I must feed it back so that others don’t fall through the net. I will try the new times from tomorrow and hope that it improves things for me.
I also had a pain clinic appointment today. I like it when I have two appointments in one day as it saves an extra trip. Dr Peat, the consultant is very good. I appreciate her no nonsense approach and her unquestioning understanding of how awful long term pain and nausea is. I’ve been suffering from shin splints lately. She suggested a few things and gave me some anaesthetic cream to try too. If that works I can order from the GP.
Tomorrow and thurs I have ECP so that’s four appointments this week. Back to normal eh? To make matters worse, my long suffering partner has gone away for a week. It’s so important that carers get a break. All this illness and hospital stuff takes it’s toll on them. They are often the hidden victims.
All this means I have a week of being unsupervised. Lol. There may be trouble ahead. I wonder what mischief I can get up to?
Sadly, physically I’m not up to much. My nausea is bad just now and my skin is really itchy. I keep getting awful pains in my tummy, joints and muscles too. I have to wait about another 6 weeks to find out if the Rituximab has worked or not.
Despite all this I try to remain in good spirits. I consider myself blessed in that I’m treated by the best the NHS has. I have a wonderful home and great family and a fantastic circle of friends. I also live in hope that things will improve.
I hope wherever you are in your life that you too can live in hope and see your blessings.
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