MPN Voice

Support from family and friends

Hi everyone. An update on the saga. Saw someone from Age Concern last week who did some investigating about what was available here in Chepstow. She rang today to say that there is nothing to offer people in my situation and said it's appalling! She has given me the name of two companies who will come in and do whatever I need,I.e.take me for a drive or coffee and a chat so will check them out. Some of you have suggested getting a pet. Unfortunately I am not a pet person. You've all been so kind and supportive and that means a lot so thank you. Fingers crossed that things will improve. I am also here for anyone who wants to chat or needs support. Hugs to. You all. Mary

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Hi Mary,

glad to hear you've got the 'ball rolling.' Hope for your sake something good comes out of this.

Mary x

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Mary, thanks for taking the time to reply. Fingers crossed! Mary

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Hi Mary

So pleased you have taken the first step - that is often the biggest. It’s shocking that there is no help for ‘your situation’ - I presume they mean because MPN’s are hidden illnesses there can’t be any thing wrong with us!!! Grrrr, it makes me mad! I think that if the people who control the financial reins for this kind of help experienced just one day of what people here go through all the time, money would come flying from every direction to help.

I hope your chest infection has cleared and you are feeling a bit better.

Are you a Facebook bod? I finally took the plunge a couple of months ago and have joined groups sharing my interests. I find the comments and chat from all over the world really cheer me up. I mean, I never thought I would be chatting to a lovely lady in Western Australia about what tricks she has been teaching her collies!! You mention you aren’t a pet person but I imagine there are all kinds of groups out there which may pique your interest.

Good luck with the agencies and Keep us posted.

Sending you a big hug

Gill x

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Hi Mary

As Gill says the first step is always the hardest - good on you. Hope all goes well with the agencies you've been given and that you get the support you need. Let us know how it goes. Take care Denise

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SUPPORT FROM FAMILY AND FRIENDS. Hi everyone. Another winge. Have had another infection. Went to A & E about 10 days ago with unbelievable pain in my side and abdomen. Am just completing antibiotics for urinary infection. There seems to be no end to this and I'm feeling so unbelievably tired, sweating, breathless, weak legs (have just started physio for that),. I just don't feel well. Spoke to haemo. On Monday and bloods are fine but she has requested a scan re kidneys. Try to keep going but to be honest it's getting pretty difficult. The fatigue is the greatest problem so assume it's the Hydroxy. Saw nurse from St. David's and went to their day centre last Thursday. Absolutely shattered and was wiped out and in bed until today. I definitely need some kind of support but all there seems to be is a live-in carer or a residential home. No can do. So there seems to be no solution. Sorry to keep on but life feels pretty grim right now. Mary.

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I so feel for you, Mary. Things just seem to be stacking against you at the moment.

I notice you posted this on your previous comment line, which may not be seen by many - it may be worth your while re posting it as a new comment.

Do Age Concern not have volunteers who visit/phone? Might that be a help to you - somebody to talk to and bring news of the outside world? I don’t know if Social Services may be of help - if you are struggling surely they have a duty of care to help. I arranged for them to visit my parents, who both have Alzheimer’s, and they had a wonderful team visit. My parents can afford private help but it put them on the local authority’s radar and they do get a call from time to time to make sure they are getting the help they need - they also arranged for free mobility equipment to be installed in the house. If you qualify for free help they may be able to suggest ways in which they can help you with your daily life.

All I can suggest is make sure you drink plenty and listen to your body - rest when needed and try to get a little exercise when you can. I find an Epsom salts bath helps ease my fatigue and pains and have one every afternoon to help me stay upright into the evening.

Keep posting - you have a wonderful family here who will support you as much as they can.

Best wishes

Gill x

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Hi Gill. If only! There is no support facilities here in Chepstow where I live. Have tried every avenue without success. The only thing that has been suggested is a live in carer or a nursing home. No home visits or day centres here although I do have a befriended who comes for an hour a week and someone who comes to clean (have to pay). Everything has been cut to the bone here and as the person from Age Concern said "it's appalling . You might read my recent post too. I am slowly recovering from the latest infection and am hoping for a period of reprieve. Thanks for your kind words of encouragement and understanding. Keep well. Mary

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Hi Mary

That's shocking! I can't believe how the authorities can make such cuts and think all will be well. Perhaps if they cut some of their middle management they could release funds for the more important jobs. It makes me so mad!!

I did notice your post, hence my reply. You really sound as if you have been in the wars. It's depressing how one thing seems to lead to another. I had that about 5 years ago following a prolapsed disc - everything seemed to hit me from all directions at such a speed I didn't know which way to duck. Mind you, all the tests they did ruled out all the things they would have had to test for when diagnosing ET so I suppose at least that diagnosis was quite straightforward (eventually!).

Stay warm and look after yourself as best you can. New posts on here will get the support flooding in I'm sure. Not much help with the 'hands on' help but I find it a morale booster. With a husband telling all and sundry 'she has got a cancer but it's not that serious' he forgets 'she' has a voice and is struggling with more than raised platelets!!

Best wishes

Gill x

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Dear Mary, it’s not a surprise that things seem grim given what you are experiencing. It would be hard for anyone to have to experience all that but I can’t imagine going through this by yourself. Please keep us posted about how you are. We care a lot. In terms of pets, studies find that even a fish in a plain old fishbowl is beneficial to people, especially those who live alone. I had a goldfish and it was a nice addition in my life. Sending you ehugsxoxxo. Katie

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Hi Mary, Just sending (((((hugs)))) Raff

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Support from family and friends. Hi Raff. Your hugs are very much appreciated. Need all I can get. Thank you so much. Mary

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Hi Mary this seems so unfair. Don't complain about 'whinging' this is exactly the place to do it. You can get it off your chest and get lovely responses from people who know what you're going through, will hopefully make you feel a little better and above all, who care! Hope that somebody can come up with some positive solutions for you.

Take care Denise

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