Scared About The Future...

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MissCommando | 19:46 Mon 18th Feb 2013 | Body & Soul
28 Answers
My husband has had an illness for 4 years now and it seems to be getting worse :( He is only 30 and can have a few issues with 'incontinence', not full blown but leakages.

I actually said to him yesterday that being in a wheelchair is the least of his problems. His illness started off affecting his legs but seems to be affecting his arms, causing his arm to shake and it sometimes happens to both. He had to drink his tea through a straw in a cafe recently as he couldn't hold the mug.

In the last week or so, it really seems to be affecting his swallowing. He has almost choked a few times this week on tablets and food. I have such a phobia of choking, it's the one thing I can't deal with. I'm the same if one of the Residents in work choke, I turn white and start shaking.

It looks like, for the time being, that he is going to have to eat a pretty pureed diet. I am absolutely gutted about it (obviously him more so!). I just can't imagine how restricted it will cause his/ and our life to be. We both enjoy our food, it's the one thing he can look forward to and he hasn't even got that at the moment. I am so scared about the future and disappointed how bloody awful life can be for some people.

Sorry for this miserable post but I just don't know what to do :(


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Miss Commando, how awful for the both of you. I can't imagine the hell you are both going through and if you are miserable I don't blame you !! Do you have any support within your family?
I am so sorry to hear this, it must be awful for you both.

Is there anyone you can talk to about it? Maybe there are things that can be done to help the situation.
@MC - This must be a horrible experience for both of you, especially your husband, but such progressive chronic illnesses exert a toll on everyone including carers and loved ones - Sorry to hear about the stress you must both be under.

Cannot offer anything especially constructive accept to say you should if possible rally the troops - bring the family in to offer as much help and support they can.
I do not know what disorder your husband is suffering, but if it is a well-defined one, like Motor Neurone Disease for example, there are charities that are often willing to offer some help, information and maybe support.
Wow to put things into perspective for some of us on here.
I looked after a sick husband but not at your age...are you getting all the help and advice you need?
I did lots of things for OH but one or two were just beyond's hard to accept you with the choking...but it's how it is. Don't beat yourself up about that. do you know if his swallowing problem is long term or not? Will you be able to find out? Gx
Have you considered contacting the Butterfly Group? Even if they can't directly help you and your husband, they may know of support services elsewhere for his specific condition:
Hi. :) Life can suck sometimes. It's true, and we are so fortunate to have life, and love.

All I can suggest is make the most of it. Make the best food and puree it. Make nice soups and mashed potatoes, mmmm I love soup and mashed potatoes. Nice stews are also good pureed. Enjoy wine together, even if it has to be drunk through a straw, just be careful, alcohol through a straw can get you very drunk. What I'm trying to say is enjoy each other. Im sure you already do.

Its a sad fact, people get ill. You are very young to be going through this, you sound the same age as me. :) I dont have answers apart from make the best of life for each other. Get support, you will need support, it sounds like you already do need support.

I wish you and your husband all the best. Good luck x

My heart goes out to you and your husband. I hope there is some sort of help out there that would help your husband overcome his illness. All the best to you and him.
Do you belong to any support groups? I can't name one but I know there are several for people with many degenerative conditions. I have a relative with MS and her local group is helpful even if only for advice.
Oh Miss Commando - my heart goes out to you both, as others have said, do seek out a support organisation for the particular disorder. Caring for someone you love so much is very frighteneing and tiring, take what help you can so the time you spend together is good time.

Your GP surgery will be able to advise re continence help too. Take care and keep talking to us.

Miss C, I am also sorry to hear of your problems and worries and at such a young age.

Apart from the society for your illness, (may I be bold and ask if it is MS), could you not get some advice on support and groups from your doctor, failing him/her, your hospital or your local Citizens Advice Bureau.....
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Wow, thank you so much for taking the time to send such lovely supportive replies. There are some lovely people on this site.

The problem is that it's a very rare condition (they think it's Issac's syndrome/Neuromyotonia). It's been a tough 4 years just trying to get a diagnosis, been passed from pillar to post and had to go private in London. He has painful muscle cramps throughout his body, he barely sleeps at night, he is shattered during the day, he can't work, can't drive far, numbness and tingling, stiff muscles and his calf is completely buggered so can't put any weight on that leg.

He's had a calf biopsy which showed nerve damage. He's had MRIs, EMGs, MRN scan, botox injections, a lumbar puncture, umpteen medications (which don't work), a plasma exchange (which didn't work and he had a major bleed when they removed the line).

We have a fantastic GP, so supportive and couldn't do enough but at the end of the day, she's just a GP so only so much she can do. We will go back to the GP this week regarding the swallowing issues. My husband is on a forum for people with the condition and many have reported swallowing issues as those muscles can be affected.

His next appt with the Neurologist in London isn't until June!

This has been one of the most difficult weeks of my life, I love my husband to bits but am worrying so much about the future and I've been very frustrated and offish with him at times. It was my birthday last week and I found it so hard because he struggled to eat and was so fatigued when we got home. I feel guilty about eating :(

I do feel like I need to talk to someone, don't know if it'll help though. I am so down at the moment.
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Oh and last time he saw the Consultant in London he mentioned him needing a chest X-ray every 6 months due to a chance of an increased risk of cancer of the lung and thymus but nothing has been done on this front.

Keep that chin up girl. You yourself sound like a very lovely and caring person. It does take its toll caring for someone, and you yourself will need support, as you are aware.

Take care of you.
Oh you poor lass.x I can tell you what I did in your situation but I was in my are much younger.
We decided that each day would be the best we could make it....if the best was a duvet day playing Trivial Pursuits that's what we did.......special days would see a tray on the bed with a silly cake and candles....perhaps some fizz to sip.
You can have days like that but you need time away too perhaps. Can someone take over for two or three days while you go away with some friends.
Does your family help you both? x

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I live an hour and a half from my family but we are a couple of streets away from his. His family help out with childcare (we have a 6 yr old daughter) and are very supportive. We have the chance to go away in May so we shall see. Thanks for your answers and sorry if you think I'm being an annoying cow.
@MC It is entirely understandable as the main carer to experience bouts of any of the following; frustration, resentment -anger even- but most especially it is guilt.This usually stems from a kind of overwhelming sense that your own life has been hijacked, that all that responsibility of care is thrust onto your own shoulders.

It can be extremely stressful.

It sounds like you have a GP who is on the ball, helping with the correct diagnosis and most appropriate treatments etc, although not having another appointment with the specialist does seem a tad long. It does sound like the correct diagnosis of the type of neuromyotonia is very important for the best treatment.

That Butterfly support group that Chris mentioned earlier might be worth getting in touch with, and I can only suggest getting as much support from family and friends as possible -as much for you to vent and get some release as anything else :)
You are not being an annoying cow at all.....thinking that comes from all the giving you're having to do. We feel guilty for expressing our feelings and doubts.

Any chance you could go away for some let your hair down fun with some girlfriends? Just to breath and relax a bit.....charge up those batteries.
Not at all are you an annoying cow, Miss C, just a knackered moo perhaps (lol)

More seriously, you have to get the occasional break for yourself or you will do yourself damage - your reactions and frustrations(?) are totally natural. Both Gness and I have Alzheimer's mothers and we know the issues with them, an awful slow degenerative disease. It is absolutely essential that you get little breaks say during the daytime, even it's just a coffee or whatever with a mate (perhaps on the back of shopping), then the occasional evening away, and then some longer breaks.

You don't love them any the less, in fact I would say more, as you can put things in perspective. You also avoid the downside of depression - that has happened to a family friend recently whose much older husband has had heart issues and combined with Parkinsons. She has been with him 24 hours a day and it has caught up with her and tipped her into depression needing medical treatment - she is now beginning to surface, but part of it has been that her family have rallied around.

I well know it. I am ok on the daytime/trips to the pub, but I need a break at the moment, even just 24 hours. My sisters have been a little unfair, but the eldest one has said that I should grab a week off when she returns from her (long) trip to their American abode.

factor this in to your thinking as it does help us.........we are here by the way if you need us and, if you do want to take it off line, then we can set something up. The Isaac's I have heard of but no personal experience, the issues of care though share many commonalities though. However, you never know, given the diversity of AB there maybe someone who has had practical experience of nursing or caring for patients....
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Thank you everyone, I find it's easier to 'talk' to strangers.

Yeah I could possibly go out with some people from work.

Thanks for that website but his condition isn't listed on there lol. Thank you all so much xx
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Just read your reply Desktop, you are fabulous at giving advice - such a lovely man. Aww, I work in an EMI unit and I'm lucky I can go home and think "Thank god my shift is over". I really care for the residents, they are all fantastic characters (bar one lol) and I see how it affects their families, so sad. It must be horrendous (for you and Gness) to see it happening to your mothers :(

Well I've got to say that I do feel a bit better for getting it off my chest a little so thank you.

I know there are people out there going through much worse things (and I never forget that) and try to remain as positive as I can but there's only so much we can take sometimes.

I hope your sisters pull their socks up, it's not fair on you. I hope you have some support x

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