Finally out of hospital

Hi all

Firstly, thank you for all your kind words and thoughts. I haven't been on for a while and just being discharged from hospital after 4 weeks.

Prognosis is they think I may have had a mini stroke/blood clot on brain, though all my test and scans were clear they think the volume of steroids I have been on since Nov may have masked the clot. I have triple positive APS antibodies and high lupus activity.

It's been very scary and realisation has definitely kicked in as to how serious this illness is. I had my first Rituximab infusion last week, I did have a reaction followed by various side effects. My next one is on Fri and I'm scared. I also being started on Gabapentin as I have lost use of my right hand. This is making life very difficult as I am right handed and I'm struggling with day to day activities. I live on my own and obviously off work.

My pay is due to go down to half pay next month and I am a mess. I can't physically go back to work yet or even cope on my own and still trying to accept my health is deteriorating quickly. I look nothing like me.

Sorry for my post but I have no idea where to turn, how to feel, what to do and I am so scared but I feel like I can't open up to my family or partner as I think they have had enough.

Big hugs to you all 😌

4 Replies

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  • You have been through a terrible time . I hope the rituximab kicks in and you start to feel better in next couple of weeks . Would your HR Department or citizens advice be able to help you about your work problems. Sending you lots of positive thoughts , best wishes xxx

  • I have spoken to citizens advice today and going to see what support I can get through ESA and PIP. It's really tough but I know all of us on here are going through the same and it's nice to speak to others x

  • You are taking the right action, good luck with all xx

  • Im glad to hear you are out of hospital. It sounds horrendous what you have been through and the issues with pay at work must be additional stress when you should be recuperating.

    I'm sure your husband and family have been worried about you but I do understand you feeling that you can't talk to them about your illness. I have issues with people just not understanding chronic illness and some relationships are suffering because of it.

    I hope perhaps when you feel a little stronger you can open up to your husband is some way.

    I'm sure everyone on the forum is behind you and ready to be there for you when needed.

    Best wishes

    X

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