PBC Foundation
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Fed up with my family!

Hi everyone. It's been a long time since I last posted but thought I would update you on a few things. Good news is that I got awarded early retirement on health grounds at Christmas and that has made a big difference to my well being! Happy to talk through the process I went through with anyone, especially if you have a teacher's pension. I have also just managed to secure holiday insurance for a year with cover2go. They were brilliant. It cost me £60 only for my medical conditions and I have loads on top of my PBC. The normal insurance came to £70, so for £130, I am now covered for a year! So worth it for piece of mind.

Just one other thing, I suffer from chronic fatigue and can have an attack anytime, usually after a heavy week, lack of sleep or mental stress. A good day I will sleep until about 6pm, the worst attack was for 40 hours. Have had two of these in the last 6 months. I wondered if this is the same experience with others, or are you tired all the time. The hardest thing I find is the attitude of my family, some who are in the medical profession! They dismiss this and will say things like, you need to exercise more, which is very difficult when you're practically comatose in bed!...or it's just in my head and fight it!!! This upsets me loads and now I don't tell them if I am having, what I refer to as 'one of my days'. Even when I say the tiredness is very different from 'normal tiredness', and that even breathing is hard work, and I liken it to severe jet lag, doesn't really help them to empathise with me. Does anyone have similar experiences and if so what have you done to get people to empathise and not put it down to being lazy!!

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Im glad to hear you have managed to retire early. It saddens me to think their is no support.

I have a good family but they certainly dont understand and believe getting out in the fresh air and a walk will do me good.

I try to explain that just getting out of bed is an effort. I work full time which is a struggle but have a good job which allows plenty of rest.

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Thank you. It's good to know that my family are not unique. Makes me feel better.

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Not sure if this will help you but someone showed my husband the "spoon theory". He said seeing a visual helped him understand. He was always sympathetic but this made him really realize what I meant when I said I can do nothing. As far as fatigue goes I deal with a daily reduced level but then I have days where it is all out war just to not fall asleep where ever I am.

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Could you please tell us what the spoon theory is. Would love to show my husband

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Thank you.... What's the spoon theory please?

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Here is a link the original story of the spoon theory is is from a lady explaining lupus to her best friend who does not understand.

butyoudontlooksick.com/arti...

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What am amazing story. Have you shared this with others on the site? Thank you. I will pass this on to my family.

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Thank you so much for sharing this. I couldn't get through it without crying 😢. I've already shared it with family & friends. Thinking of possibly reading it to my church family. Just not sure if I'd be able to get through it without breaking down. Again, THANK YOU😊

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Shulsey,

Miss you girl. Hope you are doing the best you can. Keeping you in my prayers every night. ❤

Stella ❤

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Hi , I take it that you were too young to take early retirement, did taking medical retirement have an impact on your teacher pension. I am a uk headteacher and have decided to take early retirement, didn't think of applying for medical retirement.

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Yes I took early ill health retirement although I could have waited 8 months till I reached 55. It gave me about 3 years on my accrued days but more importantly not needing to find work to keep afloat. I too was a headteacher and believe fully that the stress of the job triggered off the PBC. Do message me privately if you'd like to chat about it. Happy to give you my phone number if that helps.

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Hi thank you, how do I private message ?

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Have sent you a message. Go into your profile to pick up.

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Hi I'm the husband of a PBC sufferer and have just had the latest in family fall outs because we had to cancel attending a family event as Sue had a 'PBC Dip'. It does seem that despite having explained the impact PBC has on her that no-one seems to be listening.

As we can't chose when these dips occur we have almost given up planning days out etc as we have lost count of the number of times we have had to cancel as she has not had the energy to go through with it.

Living alongside someone with this disease as made me more patient person and I do try to fully support her but others almost seem to feel like we cancel because we can't be bothered rather than the fact that we would dearly love to do something outside the limited routine we do have but can only do so if Sue is having a good day.

I'll read the spoon story and probably will share it with the family, if it helps them even slightly understand the impact of fatigue then in will be a huge improvement,

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Yes, read it. It's great.

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I also have family and friends that just dont get it. Just because I can have a couple good days they think when i say im exhausted im just being lazy. Its frustrating. Best wishes to you. ❤

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I'm with you. Have a wonderful husband but I don't think he gets it either. I know he's concerned but I wish somebody would just one time ask "how do you feel today?" I feel great most days but I have my slumps. Hang in there😊

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Your hubby may be trying to tough it out. I know did in the early days I felt giving my wife encouragement to carry on as normal was the right thing to do. She was also trying to put on a brave face and she does still look very healthy ( and is on good days).

I don't think either one of us wanted to accept just how much our lives were going to be changed by this disease.

My wife did have to sit me down and tell me just how dreadful she felt and how she really could not cope several times before I really got it.

I've now learned to read the little lines round her eyes and hear her 'tired voice' and know that's the day I need to stop her from doing anymore and just coddle her. As a couple we have had to learn that this is not going to go away and we have had to adapt our life around PBC.

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Thank you. Such a sweet story. My heart goes to my husband. He lost his first wife to cancer & now this. But, in my favor he is strong in his faith to God. Most days I feel I could run a foot race. But when I really start thinking about PBC, I drop. Would love to visit with you again. About to leave for work. Have a blessed day!

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