I have ET Jack2 CALR and chronic fatigue.. Fatigue is.awful although I do try to do small jobs. Have had UTIs for the past 2 years - loads of antibiotics. Have had episodes of crying and shaking and spent the .ast two weeks like that. I had a very traumatic past
And am finding coping with the other conditions together with past al oat unbearable.Saw a therapist yesterday and he said to stop fighting them and myself and the only way to deal with these awful meltdowns is to go through it. I am 80 and live alone. As I have mentioned before I am totally isolated and speak to or see anyone for days.T silence is deafening. Can't walk so can't go out" a trying to be positive but it's so difficult. Too tired to join clubs -not that there are many here. Sorry friends for the doom and gloom but I would welcome any advice. Thank you. Mary
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Garden987
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Hi Mary, I have MF with some bad mutations. I don’t think I have long left but my comfort is in God. I know I will be with him when I leave this earth. I would suggest reading the Bible starting at the New Testament. That is my main comfort. I’ll be praying for you.
I know you have been feeling like this for a couple of years now and people on the site have been good at making suggestions. It’s very difficult to advise, not knowing where you live and the facilities available, we can only try to help with suggestions.
My dad used to have someone from Age Concern come once per week to just sit and talk to him. I know in my area they also do pick up and drop off to enable you to get out for the day in one of their centres, socialise and have lunch. Is there anything like this in your area. I don’t know your living situation but could you sit in your front garden? That way you would see people passing if only to say ‘good morning’ ?
You may find if you do join a club maybe just once per week, it would give you something to look forward to, and you would be less tired on that particular day.
I’m much younger than you but we all suffer from fatigue and I know if I want to go out in the evening I need a nap in the afternoon. I live alone too and often have the TV or radio on just for noise, but there are some good radio programs where you can listen to a story or a debate which is good. I sometimes join in even thought no one can hear me!
Could your daughter do some research for you on things in your area that you could get involved with?
I hope you can find something to help you feel better soon.
Hi Mary -- I'm sorry to hear about your difficult time. have ET and can relate to the fatigue. And, isolation makes it all the worse. You have my sympathy.
If you can't go out then seeing if there are ways for someone to come and visit you, as Piggie50 suggested, could help with the sympathy. Also, since you have a computer, you could join some other on-line groups -- either around interests that you have or things you might be interested in learning. Over the last couple of years, I've jointed an on-line writing group, embroidery group and taken some classes on different interests. They are all designed so I can progress at my own rate, which accommodates the fatigue. While having someone to talk to in person is always the best, being connected to others in any consistent way can help. I wish you the best.
Hi Mary. Feel so bad for you, feeling lonely is bad enough without being unwell and unable to walk. Are you allowed to say what town you live in? In case any of us live near by and could visit? Mel x
Hi Mary. I don’t know what to say to make it better. Keep posting. People on the forum care and will respond. If you enjoy sport then there’s plenty to look forward to watching this weekend. Take care. Jacquie x
Contact Mazcd our administrator, she can organise an MPN buddy for you. They may only be able to contact you online (not sure how it works) but will be a dedicated support person to give you a boost and ideas.
Hi Mary, sorry to hear things aren’t easy for you. Just wondering if you have had a recent blood test to exclude other possible causes for your fatigue, I’m thinking of vitamin B12, folate, vit D, iron, ferritin, and thyroid in particular.
I generally find that if you have a diagnosis like ET, then every other symptom you have is put down to that. It is possible to have more than one condition at a time. Ask your gp to test all these and get a copy of the results which you can put on HealthUnlocked for help with understanding the results.
I have ET jak2+ but all my symptoms of fatigue, forgetfulness, headaches, low mood ( to name just a few things) went with B12 and I also take natural desiccated thyroid ( that gp doesn’t know about 😉)
The B12 for me was quite miraculous, it was like night a day for me. It gave me so much energy and I stopped falling asleep during the day. Headaches vanished and memory came back so I can remember my friends names again 😂. Oh, I forgot to mention I had practically given up driving as I had severe brain fog. Now with B12 and NDT I drive everywhere, which is very handy as I live in Europe and frequently have to drive back to UK. Got my life back.
Don’t expect GP’s to be knowledgeable about vitamins and thyroid stuff . They are good with lots of things but not those two things.
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