Nobody cares.

[Jud61]

It should be alright posting this here , nobody reads it do they haha.

Anyway my problem is since my mum died the family have become divided. My two able bodied brothers I have not seen since and they don't seem to care. My brother and I with the cmt both live alone and could really use some help with simple tasks like tidying the garden, cleaning inside windows etc. Surely the other two must realise we struggle? Don't get me wrong it's not just the odd jobs (which we pay to get done by expensive tradesmen) but the psychology of being tossed aside just because we drew the short straw is difficult to come to terms with too. Moan over.

[Amanita]

Hi Jud,

Really sorry about your family split, and the uncaring attitude of the non-CMT faction. It must be very hurtful. Did your able-bodied brothers' behaviour to you suddenly change, or were they never that close ?

I have no living relatives at all (some people say I am very lucky !), and have lived alone for the last five years, and cared for someone the previous two. So am used to doing tasks myself (ingenuity needed sometimes), paying people (cleaning and gardening), occasionally asking friends (if it's something small and urgent) - or just not getting stuff done.

Occasionally a friend will offer to do something, and that is wonderful. I am ridiculously grateful if a stranger holds a door open for me.

At least you have one brother who understands, because he has the same problems. I hope you give each other great moral support.

My burly neighbour quite often observes me as I struggle from my car and up the path with the shopping , one bag at at time, and all I get is a cheery "hulloyouallright ?" before he vanishes into his house ! I have a good private laugh at him afterwards - keeps up my spirits much better than feeling badly treated. (I am the nobody who read your post.....)

[gunner in reply to Amanita]

Cont. .my younger Bro also has cmt and we use to talk about our difficulties as I feel he is the only one who understands which we did & he use to call me once a month which was nice but he still works and had a family and I don't want to bring him down as he is struggling on line we all do. He's is 10yrs younger so .... but he had said b4 that he knows how hard he finds it sometimes but can imagine how hard it will be for him in 10yrs time. Im only 48 and at times feel like 78. Only my Bro understands about the mental side of the disease. But now he don't call anymore I think cos he doesn't want to keep talking about it which I can myself understand. But now I don't hear from anyone they don't know how important that little call means. It we have broken down as a family unit, until xmas then we get together bcos we go to parents house but once a year is just not enuf. My Bro always says im always welcome to go stay with them but now I take med's. And find it hard socialising & I feel comfortable at home where I can stay in control. My cmt effects my whole body now I can't deal with being cold and can't be out in the sun as I burn very easily so I do stay in mostly but try to do as much as I can. I've just completed the wrag course which was a waste of time tbh. Now I have a appointment at the job centre again!?? Just rediculous. Another thing is the so called experts in this field say it don't effect u mentally but I beg to differ as I find I have short attention span and can be talking and then just forget what I was talking about and my memory is getting worse,and many other cmtrs in line feel the same. I also sometimes can't remember what I've done which is frustrating is like i have something to say and if I can't say it right there n then it gets lost. Or I'll go to say something about a person but when I go to say it, it just goes and the more I try to remember the further away it goes and completely forget what I was gong to say, which is really frustrating. 😠Anybody out there havein these probs also would be nice to know? Maybe I've got early signs of dimentia who knows! What ever way I look at things I don't c a grt future ahead. I suffer with depression since around 1999 and diabetes and respiratory issues all bcos I've got cmt as I've been told they generally go hand in hand??

Rant ova phew!😐😕

[Morllyn in reply to gunner]

gunner I have Multiple Sclerosis And was having memory loss after my last attack. I spoke with my neurologist about it during my last visit and he said that depression can cause memory loss. Maybe the depression is causing your attention span and memory issues.

[kitbo21]

Hi Jud61.. So sorry for your loss of your mum. Such a shame that the family have split too. If your near Glasgow then join my CMT page on Facebook, it's a wee support page for us CMTers and we meet up every now and then for lunch and share our stories xx

[LoolooLacey2 in reply to kitbo21]

Hi Kitbo21, where do I find your page on Facebook? I live on the East Coast of Scotland about 2 hours from Glasgow. Be nice to chat with folks near to me. Thanks.

[Bris09]

Sorry to hear about your loss, I hope you are managing and seeking support from your brother and friends. People manage the grieving process differently so things may improve over time with relationships. I hope they do.

Regarding emotional support for you it may be worth contacting your neurologist to see if genetic counselling is available or google iapt (improved access to psychological therapy) services local to you?

If it's more the practical things, i find that difficult after becoming more dependant on others but often find I need to pay people for cleaning etc, get shopping online which it sounds like you're doing.

Or ask people that you have good relationships with such as neighbours or friends.

I wish you all the best and hope posting in here helps in some way.

[oliverdeb]

hi Jud61 , do what you can dont let things upset you , one day at a time , enjoy your life before we get old , i have been tossed aside from birth , i had to be tough and i will do it my way . some things you can not change , thats how it is . the more you realise that life is not fair the more you can live content !

[gunner]

I feel the same but live in my own and me &my bros and sister use to be quite close but I feel that is no longer there as they have there own families now. I'm lucky that I'm close to my parents more and my cousin comes round as we have our own connection since we were kids. But I do think about what will happen when my parents are no longer with us hopefully still many years yet. But I have thought about the future and it is quite concerning that I will end up on my own. I still manage to do housework when I'm mentally & physically able. But it is difficult to keep up with it all. Maybe they don't really know how much of a struggle everything is for me or the full extent of my problems bcos we don't c much of one another and I don't usually grumble much!?and I suppose they live quite a distance. And even tho I was signed off by ny 2 previous gps the government seem he'll bent on getting my into work? ??😡😧😪😓ok rant ova for now!😉

[curlyburli]

Sympathy I too live alone and depend on friends when they are available to help. I struggle to do things myself. How old are you and your brother. I have a cleaner through Age UK.

[Amanita]

hi Gunner,

I don't think there is any connection between CMT and diabetes. If you have both, it is just very bad luck. I don't know of probs with memory or concentration being part of the CMT package, but they could perhaps be caused by feeling depressed as a reaction to your CMT, or maybe by the medication you take. Is that something you are able to ask your GP about ? . Respiratory probs can be part of CMT, though, if your diaphragm is weakened.

[Jud61]

Thank you everyone for all your replies I am really sorry to hear how others feel too although it's good to know I am not alone in my struggles. My younger brother 57 (cmt) lived with mum in the family home so it has hit him the hardest. My able bodied brothers one lost his wife a couple of years back and doesn't like to socialise. The other brother who is the only one seemingly 'normal' with his own family just moved to a very smart bungalow and his wife is very house proud. I visited once with other family to his old place and that was bad enough, having our wheelchair tyres scrubbed before entering and being asked to remove shoes. I just wish folk realised how bloody hard it is to walk without our shoes. Anyway my place is very dusty and cobwebs everywhere, I feel too ashamed to have anyone visit especially if they are posh! My brothers son my nephew only contacted me when I was in hospital to ask permission to use my medical notes to get to kńow if he is likely to pass on cmt when he gets married! My other lifelong friend has just cut me off and I don't know why. She was the only one who sent me a Xmas pressie now that has stopped this year. I have emailed lots of times enquiring how she is but she always says she's too busy and will reply later but never does. I always blame myself thinking it must be me who is probably too boring to be worthy of anyone's time. Depression is the worst part plus I can't drink to drown my sorrows any more as it affects my liver. If I could drink I would be alcoholic that's for sure. I am retiring in March next year so at least there will be ESA gone for good. I should count my blessings I guess!

[Amanita]

Jud, you really should not worry about people coming to your house and seeing dust and spiders' webs ! My house has stuff and piles of paper all over the place, and is pretty untidy ; but if visitors are inclined to be critical of that sort of thing, then they simply aren' t the right sort of visitors ! They should come to see you, not to criticise your habitat. Even some posh people live in untidy houses. Maybe you are confusing posh with house-proud...? If I am expecting a stranger, I warn them I live in a bit of a muddle, and they are usually extremely tolerant. The house is essentially - but not fanatically - clean, there is somewhere inviting for them to sit, and a mug of good coffee to drink (if they carry the tray through for me).

I think it was very bad manners on the part of your sister in law to make a big fuss about wheelchairs and shoes. She could surely have arranged a discreet mat or two for your wheelchair to go over to blot off the mud before you went on her best carpet.

I have discovered there are people who simply cannot handle disability. I have mentioned my CMT and some of its problems very briefly to one or two people I considered as very old friends, and they simply switch off and change the subject. I find this very strange. Perhaps it is a common reaction ? Do they think talking about it will make it contagious ? are they afraid I am wanting them to say something sympathetic ? Is that the reason your old friend has abandoned you?

I am sorry you are depressed. That must be very hard to cope with.

[Jealousone]

Hi Jud, Sorry to hear about your family and their callous treatment of you n your brother - but people are people and everyone is different, and their behaviour is different and sometimes difficult to understand. I have found if people are in a situation that makes them feel uncomfortable, they will ignore it as and the people associated with it - so it makes them seem uncaring. This behaviour is very hurtful and damaging to all.

I live in Australia so our health systems are different. We have home maintenance businesses here that will do jobs for discounted fees for people on pensions - disability pension. Contact social worker or occupational therapist - I am sure you have sourced every avenue available to you. They will clean your house for you and do small jobs around the house for very little money.

My parents have both passed away and that has split the family - me and my eldest brother against the other one. As time passes on the rift has slowly healed but things will never be the same. When my dad died, one brother wanted the other to give up his life to look after our mother - she wasnt mentally stable and he wasnt mentally strong. I objected and every one was yelling, my mum went into a nursing home and I was on the outer and our family was split. Families are mind boggling.

I hope this was helpful and there are caring people out there.

[Ladywonder]

Yes we all struggle in our own ways I'm married with children and we do not discuss my CMT Ijust deal with it . My sibling all have cCMT as well and we to don't discuss it nor did we as growing up not sure why but I find we have done this with our children as well you can't change what is or will be I think is why we don't discuss it . It's easier that way I hate feeling like I'm complaining and do not want pitty I just plug along best I can house not clean but if company comes they either live and understand it or if they were nice would help clean it . If they don't like it then I don't want them here.