Support from family and friends

I wonder if some of you do not have support from family and friends and if so how you cope. I have ET - JAK2- and am being investigated for MPL, CALR and ..MA? plus further blood tests because of debilitating fatigue. I also have CFS so the fatigue could be associated with that. I live alone and have only my daughter who tries to be supportive but I know she is finding things difficult. I walk as often as I can but that is infrequent and a huge struggle. After a hospital appt. I am totally wiped out for 2days and with no help things are difficult. I do try to stay positive but, like today, am finding life a huge struggle. Any words of advice or comfort will be much appreciated.

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  • Hi Garden,I am suffering wiped out days at the moment,so I understand how you feel.I am P V,just now my bloods are not good,new tests soon,but like you I am finding my usual walking dogs almost impossible.....sure it is a problem for all of us.I have my husband ,he gets very tired too with so much extra to do,my daughter comes whenever she can,but we are France and she is U K....I am coming to the London Forum,hoping for more info,esp.the fatigue that is always present.Try not to be depressed ,it makes things worse,tho occasionally a bit of a weep lets stress out !Wishing you well and better days,

    Sally xx

  • Hi Sally. Thanks for your reply. Glad you will be going to London. I know we are all battling with fatigue but what makes it so hard is that I spend days on end not seeing or speaking to anyone. Have just walked about 500 yards to town and have had to have a taxi home. Just another of those days I guess. All good wishes. Mary

  • Mary,I agree with Judy,you should be able to get some social care help,I have a friend in U K ,unwell,she has care people to the house to help her.

    Loneliness must be dreadful,could you manage a small dog,or a cat,even a budgie...having a pet is rewarding and give unconditional love.The fatigue is awful I truly know,my last two days I have achieved absolutely nothing,a trundle in the garden left me exhausted and dizzy.I hope you feel better soon,my G P has prescribed a mild 'booster' and tranquiliser too,they both really help the depression and fatigue times,she says an M P N is enough to cope with ,that life is for living and we need the help of anti depressant Meds.

    Is your G P approachable,discuss it....I could not carry on with my sculpture without,have two shows in November,without them I would not be able to to manage...I am no chicken by the way..late 70s,keep going Mary,thinking of you ,Sallyxx

  • Hi Garden987

    Looking at your posting history I notice that you have posted about this before. Obviously since then things have not improved.

    I too live alone and at a fair distance from most of my family, but I do have a circle of good friends (who are all aware of my condition but cannot be expected to fully understand the issues we all have - particularly the fatigue).

    By the way, my tagname friendofpiglet is an alternative to Eeyore which appears to be a proscribed term on this site. It's not that I think I am Eeyorish though and rather like to think of myself as particularly positive. However there are times when I get down.

    I spoke to my GP about this and he suggested counselling - in my health authority one can self refer.

    You may not find this appropriate but do speak to your GP who may well be as sympathetic as mine (if you're lucky). My GP's reaction so cheered me up that I haven't bothered with self referral.

    Incidentally, my last haematology consultation was the first time the haematologist (I seem to get a different one every time) acknowledged fatigue as a major common symptom of both the condition and the treatment (first time in 3 years). That also bucked me up!

    Try to stay positive and consider the counselling at least.

    Andy

  • Hi garden 987,

    I am not in the same situation as you as I have three daughters and a brother who all live locally however they all have families and jobs . 2 of my daughters I usually see once per week for an hour or so, the youngest is on maternity leave so I see more of her. I have been widowed nearly 11 years now and once I retired June 2016 I found I could go days without speaking to anyone. I know you have other issues apart from the mpn, I have PV and do suffer from the fatigue, but since I got a puppy in June my life has changed completely. Yes, I'm exhausted every day! But I walk the dog in the field / park near me, sometimes sit on the bench and let him have a run around and have met many lovely people to talk to. People always say good morning if you are walking a dog, not when walking alone. I have met two people in my Close that I have never met before and I've lived here 17 years! I was very tired yesterday, I sat on the sofa for three hours yesterday morning and done absolutely nothing. I think we all have to allow ourselves to feel like this. As friend of piglet says maybe your Dr can help? My dad used to have someone from age concern come and visit, have a cuppa and a chat. Is there anything like this in you area?

    I do think this has been going on a long time for you and you need some assistance to address it.

    Very best wishes

    Judy x

  • Support from family and friends. Have just assimilated your reply regarding age concern and isolation. Last week an advisor/whoever came to visit me and admitted that where I live support for people in my situation is appalling and all she could offer was someone from a Care Agency. Sorry to rant but I have had to deal with lack of support since diagnosis (other than you lovely people). There is no support here although I have just met a befriended who comes once a week for an hour. I can't get out much and when. I do it's uphill and my legs won't carry me. My daughter is very worried about me and doesn't know what to do and that breaks my heart.Isolation and ill health are killers and I'm exhausting myself trying to find a solution. So, in response to several logs some time ago about other people being worst feeling than us, sorry, but I'mm not coping and there doesn't seem to be a solution. For all of you brave people out there and I salute your positivity, try spending weeks on end with no contact from anyone. I've blogged before about this and have had kind words.I'm not only trying to live with the fatigue of ET,CFS and lung damage but trauma from the past. I know this site is about MPNs but for me they are interlinked and the stress of everything is causing even more fatigue. I have no one. I read a blog from about two years ago about people giving themselves a kick up the backside. Sorry folks. IT doesn't work. I appreciate all the suupor you've given me but right now feel I'm drowning. For those of you who are coping with this diagnosis I am so proud and glad that you have found a way through. YOu don't really need to hear my tale of woe but I have no one else to talk to. Just needed to let it out. Thanks for listening. Mary

  • Hi garden987,

    I think I saw in another post that you have two sons- in-law. I am just wondering if it would be possible for you to stay with your daughter for just a week or so in order that you could have some daily company for a while. I know it would not help long term but it may help you to get some equilibrium back? Whereabouts do you live? If it was near enough for a day trip. I would come and visit you.

    Best wishes

    Judy

  • Hi Judy,so glad your little dog is helping you to get up and out.! Our pup is now enormous and only an inch or so of the height of his uncle..we get lots of laughs with them,it does help,tho at the moment I can hardly walk about...hate these tired days,they appear without reason,best to you ,Sallyxx

  • Hi Garden, so sorry to hear you feel so alone. I am single and live alone but do have 3 good friends who are supportive, one just by email as she lives many miles away but every little helps. Why not ask Maz for a buddy who would give you loads of support. Also everyone here will always do what they can yo be supportive. Best wishes, Frances

  • Thanks Sally,

    I do feel more tired of late, I still walk the dog twice a day then just give in if I need to and have a sleep, watch TV or read. Maybe it's the change in the seasons? I hope you start to feel better soon Sally. Look after yourself.

    Much love

    Judy x

  • Hi Mary,

    I'm so sorry to hear of your ongoing loneliness. It must be very hard for you to stay positive.

    I know we all suffer fatigue to varying degrees; however, your fatigue sounds quite debilitating.

    It might well be that you have depression attributed to your condition and feelings of isolation, which is totally understandable. If this is likely, it will be an additional burden to your fatigue. If you can lessen the fatigue, you could maybe volunteer an hour or two in a charity shop. This is only an example, I'm sure there are more ways for you to interact and socialise if this doesn't appeal to you.

    I know in my town the council provide a hall and transport for people such as yourself - where they can have lunch and enjoy various games. There is a charge for this - but it is subsidised. Is there anything similar in your area?

    I also wonder if you could have a chat about your lonileness with your GP, maybe taking your daughter along with you for support. A sympathetic GP should be able to see the 'full picture' and determine the best way forward for you.

    I also agree with Judy and Sally about having a pet. If you can't manage a dog, consider a cat. A pet is a great companion and so rewarding.

    I wish you well

    Mary x

  • Hi Garden,

    Sorry that you are continuing to have such a difficult time. Fatigue is very real and extremely frustrating and isolating. I have ET too, and I was getting a bit desperate about it all a few months ago and the prospect of years ahead of me with so little energy was a bleak prospect, but I am happy to say that I eventually started to feel a bit better again and am achieving quite a lot more in the day at the moment and am starting to find life can be enjoyable after all!

    I do so hope that you also experience an improvement. Even 10 percent improvement can make a big difference!

    It is good that you have a supportive "family" here on this forum. I know this internet stuff isn't quite the same as a real visit from someone and a cup of tea, but people do care, and we send hugs and love as best we can.

    Peter

  • Hi there, picture this, I am reaching out and holding your hand and giving you a warm understanding smile, because I do understand. You asked for suggestions, so I will add to and endorse what others have said.

    While weeping at the doctors one day about this fatigue, he suggested that I needed more oxygen in my body. Ofcourse the obvious reaction from me was to cry even more, while saying, so should I try to run up and down the stairs a few times a day? He said I MUSTN'T do that. Rather get an excercise bike and for 5mins a day, with it set with NO resistance, have a little cycle, gradually increasing the time

    I must say, six months down the line, on a good day, I can do 15mins... OK, not athletic standards yet, but I do feel marginally better, enabling me to cope with ( just ) getting a new small dog, which obviously needs lots of attention. Like everyone says, you then start talking to people, young and old twice a day. A small dog only needs to go out once a day for a walk if your really bad ( providing you have a garden ) and will happily curl up on the sofa with you for those all important rests, no matter how long or frequent.

    Have a think about it, who cares if the floor stays grubby for a few days because of the patter of tiny feet and your too tiered to clean it. It won't run away. Anyway, I sincerely hope you feel a little cheered that people here care and understand. 🤗😚

  • I have family but it can be difficult for them to understand what's going on, it's hard enough for us! But I spoke to a specialist in London specifically about my fatigue and he said that the only improvement available is through exercise. Even if you take it very slowly and build up gradually. He said it would take a minimum of 6 months to see any improvement. At least it gave me a goal and since I have had to give up working, I have the time on my hands to try it. Essentially, I walk, but at a very leisurely pace. I've always found being outdoors did help a little anyway. So I fix a destination and off I go. Usually somewhere with I can get a light snack and then transport back. Oh and don't forget the water, drink as much as you can. I try to do 3 to 4 litres a day. Still have bad days though but got to try something. I also found this forum and others (other social media sites are available) quite useful in connecting with others. Keep in touch.

  • Hi Garden, you have so much sympathy from us all. I find the extraordinary thing is that when I get really tired and force myself to go for a walk, I actually improve. Gather it is a fact that we release adrenalin when we exercise and also that which lifts our mood, so it is a double benefit, as improves our muscles and makes us feel more cheerful. But I have to be very strong-minded, especially if a grey day! Like you, have ET Jak +.

    Can understand re having a dog, as dog walkers are such a friendly bunch and a dog is such a wonderful companion, but realise that it is not always practicable.

    Best regards, Tinkerbell13

  • Hi Garden sorry you are felling isolated ,I think when you are feeling low with this illness it makes you feel very alone even when you are surrounded by people! I tend to retreat into myself and also chastise myself for being lazy , in reality I haven't got the strength to get off the sofa. Getting up and about and taking in some fresh air certainly does help if you can manage it even sitting with the sun on your face in the fresh air can help if you haven't got the energy the walk. Hope you feel brighter soon Regards Donna x

  • Hi Mary so sorry to read your feeling this way , its hard i find for some families / friends to understand these MPNs i find .i get comments like you havent got it bad etc , at moment im upset and feeling guilty that my scalp is showing through on top of my head ,this for me is hard , also like you and otheres this fatigue , i have had lots of blood test done and theres no explanation to why i feel tired ,im retired just my husband and 2 cats at home now ! Do you you feel bettere asap .. I cant walk for long because i have back problems ,its a good thing you are doing your walks , im so sorry you feel so lonely what part of tge UK you live ? wishing you well Take care Holly

  • Can I send a huge thank you to everyone who responded to my call. No surprise today when I saw my GP - have yet another chest infection! (Bronchectasis) which explains in part my feelings yesterday. You all sent such good vibes and support. PArt of the problem is disillusionment and niaevity as my philosophy has always been to help anyone who needed it but here in Chepstow everyone seems so "busy" and unaware. Also I realise I've been beating myself up for not going with the flow and accepting my limitations - not a quitter! So on with the antibiotics and back to bed ready for a better day tomorrow. Hugs and prayers to all you brave, lovely people. Mary

  • Dear Mary,

    You have every right to be sad and unhappy. I think you should think about writing a letter that you can give to family and friends which describes what your life is like, the pain, fatigue, etc. And be detailed because everyone gets fatigued but ours is different so you need to explain what it's like: a nap doesn't help, nor does resting, etc. (This is something I've decided to do after my sister yesterday said I'd regain my energy, ha. She somehow decided I didn't have cancer because I told her a year ago that my specialist said my mpn probably won't kill me.) The same is true of your other symptoms Mary. If you put it all in a letter, people can keep the letter to reread and be reminded.

    I agree with others about getting a pet. There are lots & lots of studies which prove that pets are tremendous for physical and emotional health of single people, especially those who are isolated. There are "senior dogs" that are easier to care for, cat litter boxes that clean themselves, and if that seems like too much, get a goldfish. We're not allowed pets where I live so I got a goldfish. When I get home I tell him hi and sometimes I talk to him. They aren't the best "pet" but it's better than nothing. You can also foster dogs if you don't want a life long commitment.

    Another suggestion is getting a smart phone so you can FaceTime people or skype them so you have face to face human interaction from afar.

    Last, I'd encourage you to ask for a social worker who can tell you your options for groups & organizations to go to and to see if there are free rides available. In the U.S. we have senior centers (not sure of your age), library bookclubs and other free activities in our communities. I don't know if you're religious but many churches have activities and volunteers to provide rides. We have organizations that have volunteers to give people rides to many things. A social worker or maybe something similar in your area could let you know.

    As you can tell, you have a lot of unmet friends here who care about you a great deal. So the next time you're feeling especially blue, think of all of us rooting for you.

    Katie xoxo

    PS Im also a big believer in antidepressants.

  • Dear Garden987

    This is my first post here. I too am being investigated for mpn - ET. My bloods are being tested for the usual markers (platelets are 707). A few years ago I was diagnosed with fibromyalgia as all rheumatology tests came back negative. I am now wondering if the fatigue, pains, brain fog etc could be attributed to mpn. I too suffer debilitating fatigue which my family struggle to accept - on the outside I look fine so ‘what’s the problem’!

    Many people here have mentioned getting a pet and I totally agree. We have three dogs - one is my dog’s 10 week old puppy who is the sweetest, naughtiest, cheekiest little madam you can imagine! She has lifted my spirits so much while I wait and worry about my appointment (in November). I also have a cat, horse and one elderly sheep - all of which are just as mad as I am. I find having these beautiful animals around me makes sure I don’t retreat within myself as I have to look after their needs before my own. It is a struggle some days but I do appreciate it at the end of the day. If I didn’t have to do the ‘animal rounds’ every day I’m sure I would be in a far worse place.

    By the sounds of it we are both in the position of starting out in our MPN journey of discovery (!) I am SO glad I found this site as the information and advice here is just the medicine I need to put me in the picture - I hope you feel the same. If my friends/family take a while to understand I know all I have to do is get my pick up from here.

    Sorry about the essay!

    One thing I have found very helpful with fatigue/pains is a long soak in an Epsom salts bath while listening to an audiobook - I have one every day and feel ten times better afterwards.

    All the best to you xx

  • Welcome Jellybean129,

    Look forward to hearing from you on the forum. It might be worthwhile introducing yourself. You will be warmly received.

    Mary x

  • I’ll take the plunge and introduce myself - thank you for the welcome 😁

  • What about the buddy scheme mpn have, you can always give me a call, I get pissed off quite frequently with my fatigue.

  • Hi. Thanks for your offer to give you a call, I'd like that. Did you mean telephone? Not sure how to go about this but here is my email address and perhaps you could contact me and I could give you my fone number? I'm lilybe93@gmail.com. Mary

  • Hi Garden, do you feel better after exersise? I do, going to the gym helps enormously. I only do yoga and swim. The yoga group have become friends and we meet for coffee or even go out for meals.

    It's sounds crazy that I go to the gym yet can't cope with housework. I'm fortunate I'm financially able to pay someone. I don't know your age but I would look into attendance allowance if you are over 65. Word of warning, let age U.K. Help you fill it in. if you are successful use it to enjoy life a little. Get home help in turn it will give you energy to spend quality time with your daughter. Do let me know how you get on

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