C'est Ma Vie

Long time no post but its been impossible to keep everything going with all the building work here and I couldn’t see the point in posting to my blog when I really had little to say except that there was too much going on

Anyroadup, what I wanted to write about now was relationships.

As you know I’ve kind of kept up contact with some of you and other new Interwebby chums through FaceBook. Its been really good to maintain some kind of dialogue and to ‘meet new people and in that time, too, a number of new bloggers with M.E. have also emerged and it has been touching to see how the ‘old guard’ rally round to advise, comfort and advise newer ‘recruits.’

One of the issues that has come up in conversations has been maintaining relationships when you have a chronic condition like M.E. and also the way people deal with living with someone else or living alone.

It seems that the old adage of the other mans grass being greener holds true: those who live alone almost envy those of us who live with a partner. Those of us who live with someone sometimes wish we were alone.

As an only child I grew up being happy with my own company. For a while, many moons ago, I lived entirely alone for about 4 years and was quite content. It was the early 80s and unemployment was rife. I was living in an isolated spot with almost no public transport and few amenities. I had a car but as I was also unemployed I could barely afford to run it so petrol was saved for essentials like going to a shop and library once a fortnight or, even more importantly, being able to drive to interviews. Of course this was also before I was ill. Well, I say that, but I should say, before I was diagnosed. There were periods when I felt very unwell in an M.E. sort of way but I had to persevere. There was no-one else to depend upon and so I rested and paced and metered out my meagre resources in terms of personal energy and finances and somehow kept going until one day I managed to get a job. Sometimes I was lonely (this period followed the break-up of a very important relationship and I was still pining if I am honest) and sometimes I was sad and sometimes I was scared but somehow I got through.

In the past ten years or so, of course, I have been ‘officially ill’ and also living not only with a partner but with two children…and assorted animals in a situation that’s repeated the world over: parents trying to keep heads above water, financially, psychologically etc. and, in our case, with the ever looming spectre of M.E. and one child with disabilities who has many, many hospital appointments and many, many meetings…with doctors, with school, with educational advisors, physiotherapists, psychologists, dieticians, ophthalmologists, surgeons, etc etc etc. and I have been only able to get to some of these wince being unwell and always felt guilt about not being able to share the load as I would have done and as I used to do.

My M.E. chums who live alone seem to almost envy the little tribe I live in: the activity, the continuity, the opportunity for contact with people I care about and who care about me, the hope and future I can see developing in my children. The M.E. chums who live ‘en famille’ would love to have more space in which to almost connect with themselves and to have what they have come to see as a luxury i.e. that is time where one doesn’t have to explain oneself: how one is feeling emotionally or physically, to be further away from all the guilt that goes with having to postpone events, having to say “I’m sorry I can’t do that today…” or “ …You go…I’ll be OK here’ (when really you ache to go too and are sick of being left behind) of not being there at the partners work ‘do’ or the child’s concert or, alternatively, going to such events and feeling absolutely frightful and then having to spend days recovering because you dared to go to a school Carol Concert and have to reality of your condition rubbed in your nose.

In the end I guess neither situation is ideal or easy. I would hate to have been alone at times in the last 10 years. I cannot imagine how I would have managed or what it would be like to have strangers coming in to my home to care for me. On the other hand it is impossible to explain how burdensome it is to feel a burden, to deal with the frustration of not being able to do what you want to do when you want to do it without having to ask someone for help, to not be able to support someone you love in the way you would have done if you were well or to feel like you are holding them back.

Very recently, I was alerted to a piece in a newspaper where a celebrity (for want of a better word) gardener had written about her experience of living with her husband who has M.E. There was the usual description of the illness and how hard it was to watch a previously energetic man stay in bed most days and how difficult it was to come to terms with such a sudden change in his whole way of being. There was also a descripton of how hard it was to manage financially and how the gardener found herself trying to care for the husband, the children and work even harder to make ends meet and feel the isolation of the carer: how few people could understand the difficulties, that few people came round anymore because the whole situation was perplexing.

And then came the crux of the story --- there was the partial solution to the problem. The gardener invited friends and relatives to join her at her allotment where they all cheerily shared the work of growing vegetables and shared the childcare and shared the company. And then there was the accompanying happy picture of the nice gardener lady and the husband with M.E…..standing by the door to the allotment shed…smiling…with the husband with M.E. dressed (probably for the first time in 3 days) and holding onto the open door to stay upright (expect few people would have noticed that last bit).

So it was all OK then: the wife/carer had found a partial way through her dilemma, and there was company and happy children and a worthwhile and productive activity………….and something,…. something really needled me.

It REALLY got to me.

Was it the smugness ?

Was it the lovely ‘Guardian-y’., horticulturally, lovely, fresh veggie, Cath Kidson-y, Marath Stewart-y loveliness of it all…when that image/scenario contrasts with our own dear home ?

Was it the rather uncharitable, nasty envious side of me ?

...or was it that there really wasn’t much in there about the husband ?

about the person with M.E. ?

...yes, I said the PERSON with M.E.

Because he had been reduced to a set of symptoms, and a cause of all the difficulties and the sorrow (however unwittingly and however unintentionally). Nowhere was there any mention of how he might be feeling when his wife and children were out on the allotment and he was at home, alone, trying to be noble and charitable and feel pleased for them.

THAT was what needled me.

THAT was what really got to me and which made me feel guilty AGAIN…because it wasn’t and isn’t noble and I know from Sunday School that Jesus bids me shine with a pure clear light and I couldn’t…couldn’t be nice about it.

Whenever I see stories in newspapers or magazines about M.E. we…the PWME are always reduced to symptoms or ‘brave but tragic’. Either way we are portrayed as a set of symptoms with no other life and when we are spoken about as part of a family there is an emphasis on the carer.

Now, having been a carer (professionally and personally) I know how hard and difficult that role can be. I understand the isolation, frustration and sorrow. On the other hand I also now understand how difficult it can be to be the person who is cared for….particularly when living with a condition that is so misunderstood and perplexing for other people. Is it just me or for those of you who are not living alone, do you find that people rarely ask how you are (because they are so used to you not being OK and don’t really want to know or understand anyway) but often say to your partner ‘Oh it must be so hard for you’ ?

Am I being unkind ? uncharitable ? or do people not understand that actually it’s hard for me too, hard for BOTH of us …to maintain a relationship that’s been skewed by circumstances, where the balance of responsibility, caring, decision-making, financial provision, dependability has been altered beyond recognition ? to try to ensure that we don’t allow the spectre to loom too large and spoil too much ? to come to terms with the fact that dreams and plans…as individuals and as a couple …have been turned on their head?

We must deal with what life throws at us. The life I have is not the one I envisaged. The childhood I have been able to give my children is not the one I envisaged though I have done my best not to let my condition impinge on their development or happiness. The things I thought I would do and the things I thought I would be able to support my partner in doing have gone by the wayside but we have made and do make the best of what we have….and I guess that’s what we all have to do. It’s no good looking at other people and thinking if only. The other man’s grass is green but just as full of moss and weeds as your own……………………….

As the song says

‘This is how life goes ... This is how MY life goes ... I have but only one ... And she is the one who chose me ... It's not hell ... It's not paradise..’