Hello everyone. Wanting to contact "the family".about fatigue I was amazed at how many of you suffer from it. There doesn't seem to be an answer and I'm so sorry to learn that there are so many of us. I want to ask how many of you live alone. I am 77 (going on 40 in my head) and spend most days alone with no contact from anyone and we all know isolation is "a killer" but because of fatigue can't take myself off somewhere. Like Aimee, forced myself to go for a walk at the weekend and needed the arm of a comparative stranger to help me home. I too have ET but my heamo says my bloods are perfect! Not sure about that as am on the same dose now (platelets 480) as when first diagnosed (platelets 1400). Had "melt down" a few weeks ago and began seeing a therapist who has no understanding of ET and who told me I was depressed and. Instead of seeing life through rose-coloured specs. Was looking through grey ones! So,my friends, am having a rant - but am finding things a bit tough at the moment. I send you all a communal hug and thanks for listening. Mary

17 Replies

  • Hi

    Its difficult, im only 46 and suffering hugely right now. Have a rant, we all need one.

    Its difficult dealing with people who dont understand. I think even our friends and family dont really even though they try their best.

    I think its important our medical professionals understand, if yours doesnt i would really try seeking one out that does.

    Hope things pick up for you soon.


  • Oh Mary, you do seem to be going through it. It doesn't help when you are on your own, more time to dwell on things and no distractions. Are there any clubs you could join locally? I have MF, but I also have a supportive family around me, which helps enormously. We adopted a rescue puppy from the RSPCA last week, such a little joy, he keeps me busy and on my toes but also loves nothing more than sitting on my lap having a cuddle, so at the moment he is a perfect distraction. I'm hoping that as he grows I'll get out more with puppy training and walks, as I realise how destructive being home alone with your thoughts can be. So my message to you is try to keep your mind busy, take up a hobby, read a good book, talk to friends and family about how you feel, or just listen to their woes, it sometimes helps put our own into perspective. Take care of yourself Mary, kind regards, Christine

  • BIG HUGS Mary.Having a rant occasionally may be the best thing we can do when things come to the boil.. Shirley

  • Dear Mary, rant away!

    Fatigue is the most common symptom that crops up on this forum. I too suffer from this debilitating symptom with supposedly normal blood counts, although I haven't had them checked for four months - but will be at the clinic in two weeks. I'm so fatigued presently, I'm beginning to think that there'll be something wrong with the red cells! However, at least I have my husband at home and I work two days a week, so I truly feel for you and your sense of isolation. Are there any organisations that you could join in your area? I know that GPs can organise things like this sometimes. I suppose it would be a matter of finding something suitable for your condition, nothing too taxing!

    Anyway, keep on using the forum and there'll always be someone to listen and advise. I hope something can be achieved for you to lessen your feelings of isolation.

    Mary xx

  • Hello Mary,I am also older 74 but in my head i am a wee bit younger than you (37) have a look into whats going on in your area for older people like community forums or get togethers maybe your local library would have information about things for you to do why dont you give them a call.It cant be easy for you living alone there must be something available by the way please dont walk so far next time ...Big hugs Violet x

  • Hi Mary,I too am 77, going on 40!! I did send a reply a couple of hrs ago,but it seems to have gone into the ether! I really feel for you being alone,this disease we have is lonely enough without physically being alone.I live in France ,not alone ,my husband is very supportive,we are just a small family,no -one other than our only daughter who is in U K.I no longer go out alone ,having had similar experiences as yourself.The fatigue is a constant problem,even after 7yrs I still get taken unaware with it. The depression too,of not being able to do what we used to be capable of ...I have great care here from G P ,nurses and consultant,I take a mild anti depressant which helps considerably,I am fortunate that I am a sculptor and so work when I can,even if it's a bad day,1/2hr can really pick me up. As Violet has said ,can you join something that interests you? Could you cope with a puppy.....we have a German Shepherd who guards us and and is a constant companion....having just lost our older one,we are going to get a puppy to cheer me ,hubby and the remaining dog! Keep up your spirits Mary,rest when you feel the need,that too is important and chat on here,it has been a life saver for me.e hugs Sally

  • Fatigue.

  • Hi Mary, so sorry you have people who don't understand what you're going through. An awful lot of us are having a hard time just now but the strength of this forum is we understand what each other is going through and can really speak from our hearts.

    I sympathise with the fatigue, for me it is the worst symptom. Every so often I have a meltdown too so I would say that's normal and does help relieve tension! I like the suggestion from Christine about joining local clubs or something so you do get company. Maz can also provide you with a buddy to speak to which would help.

    In the meantime loads of E hugs come with this post so you know you are not alone. Kindest regards Aime xx😺😺

  • Hi Mary, yes I live alone and have come to be quite happy with my own company but I couldn't do without a few email friends who I "chat" to most days (we chat about our lives in general and although they know of my illness we rarely mention it, this helps me feel "normal"!!) and a couple of good friends I see for lunch every six weeks or so. Also I decided I had to get out of my rut when I started to feel a bit down during the grey winter days, so started volunteering one morning a week and although it tires me out I really enjoy it and haven't missed a week. If you can't get out I really recommend developing some email pals as they can really cheer the day up. I do hope you start to feel better soon, hopefully some spring sunshine will help. Best wishes, Frances.

  • Your post got me thinking about MPNs, fatigue and depression - and I thought best to start a separate thread. Mary, what you describe sounds very familiar. It's certainly something experienced by many friends who are on their own and in less than perfect health or with decreasing mobility. Others have made practical suggestions (I can vouch for the dog idea - although maybe not a pup!) Perhaps a mild anti-depressant might just give you the boost to address some of the challenges? Sending hugs.

  • Hi Mary, yes rant away it's good release that pressure now and again because the fatigue is very real and if you are going through another wave of it you will feel low. Like some of the others, l am a firm believer in pet therapy. I have just acquired a puppy and the love,light and happiness he has brought in the house is worth all the hard work. However a puppy is not for everyone. My sister who is in a wheelchair because of MS got a adult miniature poodle. They adore each other and of course she has to take it out which of course does them both good. Bizarrely in the UK there is nothing like a dog to get people talking. Thinking of you, take care, Carole

  • Aww hi Mary , i so get where your coming from, i have no motivation and awful fatigue ! Drs and heam cant see why , because im not anemic , and bloods okay , so we cant all be imagining these feelings !! but i have been feeling very low of late and teary will se a Gp on 12 th ( not my regular one ) so will ask if maybe i need a supplement like magnesium if bloods are fine how come my nails are splitting , my hair thinning and my tum plays up alot so Mary i. understand it all seems so frustrating , we do not seem to get any answers except stay on HU and Asprin. I think if you can arrange to meet up with a friend for lunch maybe or visit a lonely elderly lady i find with me can give me a lift im almost 65 , i have a husband but we live mostly seperate lives he away with friends just now ,do you have children/grandchildren? 77 isnt old its the new 60 remember. and like you say you are 40 i. your head !! maybe try something like yoga ,or mindfulness class very helpful also meeting others for chat. Do hope you will have more good than down days best wishes Holly

    Ps i have 2 cats who are my world and i have to get up out of bed to feed them, if you prefere rather than dogs but at least with dog you will need to walk them and chat to other dog walkers 🐕

  • Fatigue. Hi cat woman. Thanks for your reply. You know precisely where I'm coming from! I don' have any friends. They either walked away or I ditched them because of their negativity - don't need that. Have been to yoga but the teacher was soulless and the rest of the class didn't even look at each other let alone talk! She takes the only classes here so that's out. No mindfulness classes here either. Not much of anything to be honest. Have checked everything! I do have two daughters, no grandchildren. They do their best to support me but I know they find it difficult seeing me so different from their once bouncy, energetic mum. I'm not a pet lover so can't use your suggestion there. Have tried 5mg of amytryptaline but had to stop because I was climbing up the wall! I do visit a lovely lady of 90 when I can but she is very independent and won't come to the garden centre with me because it would mean using a wheelchair! So,nothing for. It but to somehow grin and bear it. It would just be so lovely to have a couple of pals to chat to - not about illness-. But everything and anything. I'll just have to learn to enjoy my own company. At least no one would argue with me! And watch out for Have I Got News for you. We are in this together and we are doing the best we can. Thanks again and a big hug. Mary

  • Hi Mary. Sorry you are feeling so low. I get extreme fatigue also and at times I can be in bed resting for up to 3 days if I get a severe bout. I still work 3 days a week which I enjoy very much but I have to really manage my time to make sure I'm rested. I work for a Care Company for the Elderly. I do all the training and enjoy the company. They have been fantastic with my condition. I was going to suggest maybe you could volunteer with the local Alzheimer's group as many of our clients get lonely and enjoy the company of others if they have no family. I'm 67yrs and will probably retire when I reach 70 so will be looking to do something similar to keep mr occupied.

    I think all of us with ET suffer with fatigue and and many of us get periods of feeling down.

    Keep your chin up and a big hug from me.

    Marigold x

  • Hi everyone. Just to say that I replied to all your posts but realised they probably weren't going through so sent what I assumed was a communal thank you for all your support. Am still trying to manage this blasted machine so hope this note reaches you all. It's a huge comfort to know you're all there and such a relief to make contact with people who know what most of us feel and need. BIG HUGS. Mary

  • Fatigue. Hi everyone. Need to talk although it's all been said before,. Have hit bottom. Realise it's prolonged stress from a lifetime of abuse exacerbated by the onset of ET and CFS. Throughout I'Ve had no support from anyone and have spent hours trying to get practical as well as emotional support. I spoke to Macmillan who thinks I need palliative and holistic care. MY GP wasn't sure how to arrange that but hope she can. She doesn't know about Mindfulness which I do every day. Even being with my daughters exhaust me because like a .ot of you I put on as brave a face as possible but realised I can't do that any more. My legs won't cRry me and my reflexologist has offered to co e to the house for treatments. My daughter finds it very difficult but says she can't leave me on my own. She has a 77 year old husband who at the beginning of the year had a lung tumour removed which resulted in him having a stent fitted. I know how difficult it is for her and don't want to put more pressure on her. She used to visit me once a week but I decided it would be good for us to take a break. So, have no reserves left. Had no one to pick up a prescription last week so had to take a taxi. Can't believe there is no help from my neighbours. Am very shaky and utterly exhausted. Realise I've been denying my limitations and have been endeavouring to continue to live a "normal" life. Not sure that was wise. My helper came last Tuesday and I was sobbing my heart out. He took me for a drive which helped (cost me £15). I have reached bottom guys. Feel totally hopeless and lost. Mary

  • My husband is 45 he was diagnosed 4.5 years ago with pv. He's now on hydroxy and he's doing great.

    Last year he was a wreck he struggled to drive to work.

    He decided to stop drinking caffeine in October last year as he was having hurrendous headaches. He drink caffeine free tea now.

    He feels like a new man now it's the best decision he's made to make his lifestyle more normal.

    Hope you feel better soon.


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