Supporting someone with ME can be hard on all sorts of fronts. The emotional difficulties are, for me, the worst - but when you've got a family to look after, and one of you is chronically ill, it can physically tough, too, holding it all together.
The last couple of days, I've been on the go from 6.45am until past midnight. Wednesday was a fairly typical day. I got up at 6.45am to get a swim in the "early bird" session. Swimming helps me enormously, both mentally and physically. As well as keeping me fit and staving off the flab, it's like an active meditation, clearing my head. The pool is a place where I become aware of what's going on for me mentally or emotionally, become aware of any sticking points, and mull over what I've got to do. It also helps me with my back, which has been increasingly problematic over the last couple of years. I try to swim three times a week.
If I swim, though, it's hard to get back in time to take my daughter to nursery (it's usually 8.45 by the time I get home, and I'd need to be back by 8 to get her dressed, make her packed lunch and catch the bus). There's been a whole spate of mornings over the last couple of months when my husband hasn't been well enough to take her himself, and that means I've hardly swum over the last 8 weeks. This is never a good thing. My back problems starting getting worse again and I was missing that precious bit of me-time (rather than ME-time) where I could clear my head and get a handle on things. Without the regular swim, my life seems to start falling apart. So I'm trying to get back into the routine, even though it can lead to very long days.
I got back from swimming and walked the dog. (Whoever doesn't take our daughter to nursery has to walk the dog; my husband can't do both). Then I got down to work. I'm self-employed, and the sole financial support of the family. My husband has been unable to work since he had a major relapse 14 months ago. He takes on very small pieces of work here and there just to feel useful to the world but is basically too ill to do more than that. Half a day at a time is as much as he can do without provoking seriously debelitating symptoms (which has a knock-on effect for the whole family). I worked right through until he arrived home from picking our duaghter up again (2pm) and it was time to take over looking after her. I had a bite to eat and then took her to the park for the afternoon, walking the dog at the same time. It was a nice interlude, as it happens, meeting a friend and her daughter. But I had to remain fully vigilant and responsible, being in charge of both young 'un and beast, who seem to delight in running off in different directions. Just before 5 we got home - I was pretty tired by this point. Ten minutes panic and fluster while I fail to find a book I realise I need, and then I set off (slightly late) for my teaching job - I teach mature students one night a week, from 6pm to 9pm.
After my teaching I went to the library to get some books out for the project I'm working on, and was out of there just as it was closing at 9.30. It took me 45 minutes to get home (walking/train/walking) - 10.15 by the time I got in the door - and then the dog needed his last walk of the day so I did that too, grabbing a left-over sausage roll from the fridge as I did so. It's often hard to eat properly when there's so much to do - an actual meal can be hard to come by. When my husband was well he used to make sure I ate properly, and would sometimes have a meal ready when I got home from teaching but that's all long-gone. At 11pm, I finally sat down with my husband and a cup of tea to say hi and talk over the day. His legs were pretty bad so I gave him a leg massage, which I try to do every night unless I accidentally fall asleep first (it happens) or my back is really bad. An hour of this and I was done: it was midnight and I needed to go to bed. Then I realised I hadn't printed off the details of the place I had to go to early the next morning, so it was another half an hour of sorting stuff out and packing my bag until I got to bed at about 12.35am.
This day wasn't unusual; yesterday was just as long, and just as non-stop, involving travelling to Chichester for a job interview. They say ME's all about balance between doing and resting but I'm not sure how much balance I'm getting in my own life.
Still, on the positive front, I'm getting exercise again at last, and my husband is still behaving reasonably like the person I married. I feel positive about the job interview and hope to hear something good from them early next week. Brian (for the moment) is nowhere to be seen.
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7 comments:
Just a quick note to let you know I'm reading your blog. I'm sad to tell you that I'm an ME patient, and I'm sure I'm very unreasonable a lot of the time too. ;-) Compounded at present by my father being in hospital, mother falling to pieces, and us having to try and find a nursing home for my father.
I'm sure my husband gets sick of ME and me as well. He also swims as often as possible in the early morning, but since Dad's been in hospital there's so much organising to be done that he's not managed much recently.
One of his friends at work is in a band, so he gets the odd night out clubbing when they play. We were entertained last time he went to a gig, he produced his bus pass (everyone over 60 gets one in Liverpool) and the girl on the door gave him a pound off! :-) So it was a cheap night out as he always uses the bus pass to get into town and back in the evenings. I do think it's really important he gets some time away from the house other than working.
Here's hoping Brian goes away permanently soon, or at least takes a good long "holiday". There are some email Lists for carers of ME patients, you might find some helpful support there.
I hope that your husband is getting all the state benefits he is entitled to? It is such a hassle, but any extra cash is useful when you have to do things like have the central heating on all the time, buy ready-made meals etc. It took me 2 years to get DLA, had to go to tribunal. But it's made a real difference having it.
Do feel free to contact me if you think I can help in any way. My email is on my Blogger profile.
Best wishes from Liverpool
Oh my dear, this is all so familiar.
I was diagnosed 7 years ago though I've been ill much longer than that. At the point where I caved in I was just about to launch into a new career and everything fell apart. I was very resentful, very angry and felt very ill.
We had two children, one with learning disabilities, dependent unwell eldery parents and an aged poorly dog. It was hell and at one point my partner said to me --more in sadness than in anger 'You're not the person I married.' It was a terribly sad point for both of us. I felt hurt, rejected, confused.
As those words were spoken I knew that in some way they were true and yet I also knew that somewhere beyond the physical misery I was suffering the 'real me' still existed.
We also came to a point where it was easier to communicate through letters/notes than talk. Seven years ago our youngest was only 2, our eldest was 5 but with the needs of a 2 year old and they had to come first. My partner also worked full time and I was simply unable to even get out of bed for the first few months. Later I could, but collecting from nursery would have been impossible. we live in th countryside and I was far too foggy to drive. We were both under immense strain.
In the end my partner was quite fierce and blunt. The time for pussy footing was over. There was an honest exchange of feelings and ideas. It was hard and hurtful ---- but useful. We knew how the other was feeling -- not by grunts, gestures and resentful remarks but in face to face words. Ultimatley that was what helped. We wanted to be kind to each other: one was ill and the other was holding it all together and we knew what the other was going through. We still loved each other and wanted to be gentle but it needed some tough action ---as my Mum ued to say: 'Sometimes you have to be cruel to be kind'.
You need your own life. You need to go swimming, meet your friends, do your own thing. He might be ill and resentful but I don't think it gives him the right to hold you back all the time. You are obviously caring and sensitive enough to not overstep the mark by going out all hours and leaving him behind (some hope I hear you cry!).
Having worked with disabled people for years I honestly think that acquiring a disability is different for men: no worse or better than for women but different. The shock hits a different spot.
Be gentle with your self and each other but be honest too or the fog produced by the condition will seep and spread into every area of your life until neither of you can see the wood for the trees.
Keep talking. We're listening.
It just seems like much too much to juggle - by anyone's standards. I remember when my kids were small - I had to hire a childminder for some hours every day, even when they began school (in the holidays). The only rest my husband got was the ride home from work on the train. We lived in Hackney then and got a bit of free home help because of my condition - not once we moved to the sticks, though. After that every bit of help had to be paid for, and pay we did, by upping the mortgage every few years. Even so, my husband's health broke down for a while (not M.E. so he recovered) under the strain.
I agree with cusp - learning how to be kind to each other is essential, and it's got to be both ways. Your husband's acceptance of his situation is essential (I remember feeling so much rage about the illness and how this could be happening to ME and MY life!). It sounds as though a bit, well more than a bit, of help is essential too - to give you both a chance. Wishin you well with everything.
Thank you, all of you. Hello Maggie and Cusp. It's good to know you are reading this and I appreciate your telling me parallel situations from your own lives that help me feel less alone.
It's so hard not being able to turn to anyone to talk to about this, because the main person I would always share everything with (before) is my husband, and it really doesn't do him much good to hear about my problems with his ME! And people without experience of ME don't tend to understand what it is we're going through. So your comments are very much valued, and I hope you'll stick around.
I must admit, Maggie, that we aren't getting any kind of benefits relating to my husband's ME ... I've read about the great difficulties getting such things and really couldn't face putting anything else on our plate - the process is too intimidating. Nevermind that his pride would probably prevent him agreeing to accept anything with "disability" in the title! And I was also worried about how it might effect our tax credit situation, because I rely very heavily on the child and working tax credits that we get.
Add to this the fact that he doesn't seem "ill" to other people, and when he says he can't do more than so much in a day they often say things like "is he getting enough exercise". Oh, and the fact that he is now (clearly) depressed adds another layer, because its easy to mistake depression as the cause of his problems rather than a symptom of them.
I'm unsure about the idea of not sharing some of your pain to be honest.
I can remember my partner doing/saying just the same when I was first ill and for the same reasons --- love, caring, protection. But in the end I had to say I wanted to know what my partner felt because otherwise I felt even more infantile, weak, degraded. I wanted to be acknowledged as an adult who still had responsibilties for my partner. If it was difficult to deal with my partner's stuff as well as my own that was tough, but that's life and if you're in a partnership you're in a partnership: if you're married, as we are, you promised 'in sickness and health'...now you, we, are in that position.
Really think too about the benefits side of things. I was terrified we'd all perish when I became ill even though my partner worked full time then. I have Incapacity Ben. and our Tax Credit was adjusted accordingly. We had enough money --- not as much as before but enough. In recent years my partner has gone part-time and our tax credit has been adjusted again. The strain of my partner's full time job, two children (one disabled)and the ogre in the corner called ME was too much for both of us so we decided to cut back hours and money. We're poorer but happier.
Pride has to go to the wall in the end and practicality has to take over. It takes a long time to accept the notion of being chronically ill and longer to accept 'disability' (if you get worse)but it won't go away so has to be faced. It all takes time and patience.
An illness like M.E. shifts all the parameters of a realtionship and your domestic situation. It takes a good while to adjust and to bear the pain and loss.
I hope I don't sound 'preachy' --- juts trying to give you some of the benefit of our experience so far.
Take care both of you
Am very tired, so this will be brief.
It might be worth your husband claiming DLA. This is non means tested, so any capital or savings doesn't count and other benefits too. It's not taxable, is tax free no matter what your income is.
The form is a b*gg*r. If you can, it's best to get help to fill it in. I recommend Benefitsandwork.uk (costs £16.50 for a year's membership) I used their help files last time I had to fill the ***** form in, and have been awarded low care, high mobility indefinitely.
You could try DLA. I failed but as Maggie says you need advice to fill it in. Our best bet was the local disability organisation's benefits advice people who came out and did it with us.
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