CFS/ME

out!

Hi Lucky, no experience to share or advice to give just a gentle hug!

Could you/DH consider him going into respite for a few days? It could be an investment for you both and your health could be used as a reason rather than his?

I had a with 2 friends yesterday and two of us looked on in envy as the other told us that her DH had gone away for 3 days and how lovely it was to have the house to herself - and we are all happily married to husbands with no issues like yours. You life must be extremely difficult especially if your home isn't a peaceful haven.

Thanks kitty - definitely no peaceful haven here, as you rightly say.

I have just cancelled a couple of things that were stacking up for tomorrow, and feel very bad about letting people down, but folk have paid for tickets for the concert I am conducting in the evening, so I have to make sure I am not flaked out at that point. It is very frustrating.

My OH would I know simply throw his hands up in horror at the idea of any sort of respite. His needs are minute-by-minute support - some physical, but a great deal emotional, as a huge feature of his illness is his anxiety. Every day is a non-stop litany of his symptoms and detailed medical analyses of them over and over again until I feel like climbing the walls. I do not know how any other setting would be able to deal with this. And the giving of his multitude of medications at the right times is the only way to keep him going, and I suspect that this might be hard to achieve without the one-to-one that he has at home.

It is an unfortunate situation with no easy solutions.

I am grateful for your kind words.

A way could be found for it to work Lucky if you wanted it to.

I wish we could do something to help but you know that we are here to listen.

Lucky your list of things you have to do this week, as well as looking after OH, would exhaust me too, and, I suspect, most healthy people in their late 60's.

It's time to take yourself firmly in hand. Decide which half of your extra-domestic activities give you the most joy, and start saying NO to the rest.

You say you don't like letting people down. Well, guess what. None of us is indispensable and eventually we get to the stage where preserving our own health and well-being is paramount.

I have a friend who suffered from ME for 20 years before eventually recovering from it, but she has learned the hard way that sometimes she has to say no to people, to say no to things that she might otherwise like to do, and to avoid situations that she knows are going to cause her stress.

Yup - I hear you jane - the problem is that if I say no to things, the alternatives is to be here with the perpetual gloom and doom. I need the outside activities to stay on an even keel.

I think I don't have a problem saying no - I have cancelled a couple of things this week as I know that I am not well enough to do them, and have to be practical. Not all weeks are like this - a lot of things have piled up together this week.

But the other side of the coin is that if I do not get out, then I find the constant repetition of symptoms and gloomy thoughts that my poor OH pours out minute by minute are quite difficult to handle - I am trying to strike a balance and at present my health is not bearing up to it. I feel very sad for my OH and sympathetic, but cannot close my eyes to the fact that it is making me unwell. I wish I were made of sterner stuff and could cope with it better; but I just have to accept the situation. I can only be what I can be.

The reducing of activities would be easier if the alternative were more appealing, and not in itself making me unwell.

It is a difficult situation and I am not sure where the best balance lies.

Thank you for your advice.

I have had fibromyalgia for many years, also Restless Leg Syndrome for 30+ years. Also early stage COPD, high blood pressure, and now an inflamed bowel condition. I manage ok all things considered.

The fibro I can empathise with, different from one day to the next from not too bad, to total exhaustion. Yesterday I was putting a package on top of the wardrobe, All of ten seconds but my arms felt as though I'd dragged a ton weight across a field. However I am now happy in my home life and that makes a big difference to my demeanour..

Many years ago while living with my exdh and trying to cope with my own myriad health issues it was a dreadful time. My health was never a consideration. For 22 years I listened to his woes and how life was against him. He only knew a half empty cup. He suffered from schizophrenia and was unemployable even though he was professionally qualified. It is awful to say but- most days he could spend up to 22 hours a day in bed.... and that was my saving during those years.

A few times he went to a Day Centre and again this was wonderful for me but he didn't like it.

I totally understand that continuous erosion of your mood and well being cannot bring anything else but stress, which is so bad for you. Woud your dh go to a day centre....
Some volunteers will day sit to allow a carer a few hours respite.
However, you do have lots of other interests, it is the home that is not the haven that a home should be.

I was going to suggest a 'companion' Coolgran but Lucky wants to have the house to herself, I imagine. AgeUK and various other charities can provide someone to take your DH out - if he would go.

I am hoping that you have a cleaner and gardener Lucky?

The thing is, you have to invest in your health if you are going to be able to care for your DH.

Lucky I know it's easy to say this, but please listen to what your body's telling you. I didn't and am still facing the consequences over twenty years later, though nothing like as badly as when I was first diagnosed with ME (I ended up bedridden for a while).

I fully understand how your DH drags you down mentally/emotionally when you're at home, so why not just take yourself out somewhere for a couple of hours for a break (longer if you think it's possible). Perhaps a carer could come in? If DH protests, I think you just have to carry on regardless. That sounds harsh, sorry, but you must think about your health, too.

I can understand the total exhaustion and resentment that comes with a major fibromyalgia flare luckygirl, it’s simply foul. I do get very cross with mine that’s for sure and yes, stress is likely to be the trigger

So, to apply a bit of lateral thinking, if your husband’s illness means home can’t be a haven where you can rest and recover is there anywhere else that can be that doesn’t come with pressure of any kind, even if just for a couple of hours? Not sure what might work for you. If it were me I’d take myself off just a little way in the car and sit in a local beauty spot or by the beach with a drink and a snack and just breathe. If I’m out and energy deserts me I also find cars are a good place for a nap when needed, as long as I keep the door locked.

This might be totally inappropriate if so I apologise but do you need to answer your husband when he is talking, or does he just need to talk? If an answer isn’t essential could you turn into a teenager and use those little ear buds to listen to music or a radio programme via your phone?

One problem with fibro is head fog often stops us thinking properly, I hope there’s something in responses from others here that might help you find a way through.

Please look after yourself as much as you can, I’m so sorry you are having to manage so much, wishing you well.

Have you seen the GP luckygirl? Your symptoms could be due to something else (not unsympathetic, DH had ME for 10 years before he started to feel better). Just wondering if something else could be causing the same symptoms.

Stress does not help any illness. From your busy schedule it sounds as though you are overdoing it and have no time for yourself. Can anyone sit with your DH while you go out for an hour or two just for a quiet walk or sit somewhere?

So sorry Luckylegs, I feel your exhaustion. I’ve not been well myself over the last year and am fully aware of how easy it is to burden others. So I understand (as you very clearly do) your husband’s point of view. He is afraid of the unknown, looking for solutions, support, and hope. Unfortunately, it’s all from you! That is far too much for any one person and this is reflected in your health. I wonder if CBT might help him refrain his thoughts? He needs to express himself but this cannot be always be with you. You too need support. Assume you have spoken with your doctor? Sorry, I cannot help much. I wish you well and I really hope you find a resolution.

Sorry I meant Luckygirl! What am I like!

Is there a day care centre he could go to? Even one day a week would give you some respite and he might even enjoy it.

And maybe stop doing the childcare.

Oh dear, I am not having the best of days! I meant “reframe” his thoughts......mind you, refrain might help too!

Really wish I had some wise words to offer, sadly I don't so all I can do is send you kind thoughts

Gratefully received.

Baggs - if I stop the child care then one of the few real joys of my life would be gone, and I would be left with the unrelenting gloom. Difficult balance really.

"Difficult balance" is spot on, sadly. I do understand about foregoing life's "real joys". Good luck.

corner, after horrid visits with Mum I would stop in the car and read for a while and listen to music - Meatloaf in my case, Lucky might like something different . It wasn't unknown for me to have a bar of chocolate too. That is a good idea.