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I'm at my wits end!

Hi everyone, it’s been a long time since I’ve been on here. When I was first diagnosed PPMS 2007 I was always looking at this Forum because everyone was helpful and offered advice, and I learnt a lot of useful great information. Now, I’ve been married for 28 years most of them happy, with the usual ups and downs. But I’m so unhappy now, I don’t recognise my husband any more. I desperately want to leave and find somewhere to live away from him. He doesn’t knock me around or go with other women or anything like that, but he has pushed me away physically and emotionally, I feel isolated and neglected. He has type 1 diabetes (had it for 30 yrs or so) but doesn’t really look after himself very well. For example, he won’t or can’t be bothered to cook, so it is all left to me to do and you have to eat properly when you have to take insulin, There are times when I’m so fatigued, I’m fit for nothing and unable to put a meal together, so he will make himself a bowl of weetabix! what about me?? He never complains to me or criticises me to others, but just has no idea how I’m feeling. Never talks to me ‘properly’ buries his head in the sand about everything. I wash and iron his clothes, try to keep the house tidy as best I can. He never says anything ‘nice’ to me to make me feel good and he can be depressing to be with that it is dragging me down. I really need some kind of counselling to help sort myself out. I am living in a detatched house with stairs and a totally unsuitable bathroom with a bath I struggle to get in and out of. I’ve been waiting over 5 years for it to be adapted to my needs, but told that because he works and earns over the limit (I am now medically retired with a small pension) we are not eligible for a grant (DFG) and so we go round in circles and nothing gets done.

I feel that because I am no longer able to ‘mummy’ him like I always did (totally my fault for allowing it to happen) he’s lost interest, and frightened of the future because he will have to look himself and ME. He is totally not a caring type, and I just need advice as to how I can get into sheltered housing of some sort. I don’t have a clue where to start, or what may be a possible course of action for me. PPMS is only going to get slowly worse, and it has, my walking and balance is now is very limited, and I’m scared for the future, and can look after myself but two of us is very hard.

A sharp wake up call is needed here. but I don’t know what to do. Idle threats will be no good, I need professional guidance with realistic options. Thanks for listening !

Hi Anon and welcome back.

I’m so sorry to read your post and can see how unhappy you are… and with good reason… and by coming on here and writing it all out you have at least taken the first step to dealing with it.

First and foremost, do you love your husband? I don’t mean in that young romantic sexy way… but after all these years of marriage do you still care about him to the degree where you want to save the marriage?

Have you tried to talk to your husband about any of these problems? I know how hard that can be… but something has to be said either to start mending things or to split up.

In practical terms, I happen to live in sheltered housing. If you are 55 or over and have a health problem you will be elegible. You can apply directly to a scheme (block of flats) that you know of, or you can contact your local authority for more info.

However in sheltered housing you are still living independently. So, for instance where I live, we have ‘lunch club’ once a week but apart from that I am responsible for doing my own shopping and cooking. So moving away from your husband will not solve that problem… it’s really a case of learning all the ‘tricks’ to cope with it… heat-up meals, slow-cooker (see another post on here called ‘heat-up’ meals). I suppose what I’m saying is that with, or without your husband, these daily tasks still have to be dealt with somehow.

In terms of the house, do you own it? Would you (and your husband after that long talk you are going to have with him!) be willing to sell it and buy a bungalow or a flat? That would certainly solve the problems of the stairs.

If not, could you get a stair lift? Have you looked into how much they are or what payment schemes are available? Same with shower?

I’m sure you’ll read this and think I’m being a bit hard on you as all of these things sound overwhelming and impossible when you have so little energy… but what I want to say to you is this: You have to find a way of breaking out of this rut that both you and your husband are in. It doesn’t sound as if he is going to do it, so it seems as if you must.

It is not going to get any better unless you start to deal with it.

Start with small baby steps. Firstly, talk to your husband about selling the house and buying something more practical. That, at this stage, is all you have to talk about. It doesn’t have to be a big emotional drama… just talk about the house. Don’t get into all the other stuff… stick to the house only.

Secondly, go and see your GP and ask for counselling. Your GP will refer you and it will just be a chat with someone once a week. From there you can work out IF you want to stay with your husband… and if you do… then how you can get him to talk and open up. A therapist will be able to guide you on this and on how you can help him to accept that you both need couple counselling.

Is it possible to start with those 2 steps? Nothing more at this stage… just those 2 steps?

I really do feel for you hon. You are in one of those places where you can’t see the wood for the trees (is that the right expression?)… but there are ways forward. They will take time and will not happen overnight… but you can make the changes!

Let me know how it goes.

Take care and stay strong,

Pat x

Hi Snow Leopard,

Thank you so much for your wise words. I just needed to get things off my chest, I’m so frustrated with it all. In answer to your question, yes I do still love my husband, but it is bordering on ‘feeling sorry for him’. My question is, does he still love me? Because it certainly doesnt feel that way. I truely don’t think he really understands MS, just that I can’t walk very well any more. I could leave all the books in the world for him to glance at, but he wouldn’t read them (in denial). We don’t have shouting arguments, but talk we must. We have had our house valued, and looked at 6 or 7 bungalows. One or two we both liked, but because ours wasn’t on the market at the time we missed out. In truth, we dont want to move really because we haven’t really seen anything better in terms of area and location. If I could knock it all down and build a bungalow it would be perfect!

I feel emotionally drained because it’s been like this over the last couple of years. I think he is suffering from depression because his diabetes has and is, causing lots of health issues. I’ve always been the strong reliable one, but I need someone strong and reliable for me now. It’s like the blind leading the blind. On the emotional front, I can see that it is going to have to be me to make the first move (always is) but this is serious and doing my head in. I’m not strong at the moment, and like you say ‘can’t see the wood for the trees’ .

Coming on here is helping me greatly.

Hi and hugs

Pat has given you some wise words already and I don’t think there’s anything I can add, just wanted to show some support as you need it right now

Sonia xx

Hi

Sending you some a(((((hugs))))) and please do think about some counselling for yourself, and also your husband, asit could help by both of you talking openly.

Take care

Pam xI

Anon, regarding location… I know of course that it’s important but sometimes in our situation it’s something that needs to be compromised.

In a perfect world I would not be living in an overcrowded, busy, built-up area of north London with many social problems… BUT I can get to the shops in 5 mins on my scooter. There’s a huge shopping mall which is all wheelchair/scooter accessable. My flat is very easy for me to get around and I have level-access shower with grab-rails. I’m near a tube station so it’s easy for family & friends to visit.

So it’s worth thinking about your needs and fitting them to a location, rather than going for a lovely location which won’t serve your needs.

In terms of your husband not understanding what it’s like with MS, I have to say that is the same with everyone. The only people who really understand what it’s like are those of us in the same boat… which is why I hope you will come on here more often. Maybe by coming on here you will not feel so frustrated with your husband not understanding.

Anyway good luck hon… you’ve already made a great start by sharing your feelings with us.

Pat x

Hi Anon

I also feel that Pat has said everything, and I’m with her on you seeing someone, either your GP or a counsellor as there’s nothing worse than living in an unhealthy environment. Just a thought, but are you on an anti depressant? Maybe you’d benefit as you appear really down, which would be normal with your situation being what it is, but it’s common for people with chronic illnesses especially ms to suffer, and there’s no shame in that. If you read any posts about people feeling low you’ll see that many of us use them, myself included.

They won’t solve your problems but may help pick you up enough to see things a bit more clearly. As I said I can’t add much but just wanted to let you know that I’ve read your post and would love to be able to help. I’ve had failed relationships as I’m sure many of us have and know how lonely you can feel, and just wanted to let you know that I do feel for you. Please keep on visiting the forum, people care and knowing you’re not alone is a huge comfort.

Take care.

Cath xx

Pat and the girls have given very good advice. A friend of mine’s brother last year suddenly developed type 1 diabetes and was extremely ill for two months until his problems stabilised after treatment and advice from the diabetic clinic/nurse. Daily monitoring of his problem keeps him well. Perhaps your husband is not looking after his diabetes problems along with perhaps some depression and also not eating quality food with the necessary nutrients are the main causes of his problems. Suggest you read an associated blog on this site concerning supermarket microwave meals. Good value and can be delivered to your door. Wishing you well Tony