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Yesterday we went out to The National Glass Centre. I have been really struggling mood-wise (and physically as usual) since Xmas/New Year. Mostly I think I have just been in recovery from the festive period but I have been surprised by my little depressive bout, as I have been fairly stable lately on that score.

Anyway, I have been resting up and struggling on in equal measure and just feeling more and more trapped in the house so I decided the time had come to prioritise mental health over physical (a.k.a “to hell with the consequences!”) and do something fun. My partner reminded me that apart from going away over Xmas (involving travelling by car, being in a different house for a few days, then coming home – so not really giving the feeling of getting out and about, strangely) I had not been anywhere except the odd health related appointment since November when we went into town. That explained a lot.

It was great, a bit of detail can be found here.

I feel so much better today (granted physical payback has not really hit yet). I am buzzing with enthusiasm for creative things, and feel much happier. Just managing to go gives me a renewed sense that fun things are possible every now and again, and need not be stressful if they are the right size of outing in the first place.

I am hoping that the flurry of snow that fell this afternoon does not mean we are going to have a repeat of December’s weather, as I would like to leave the house again sooner rather than later!

Yeah! At last i went out in the snow! My partner shovelled the snow away so we could get the car out and drove me up the road to the woods. The snow was crunchy and quite deep but not too hard to walk in, the sun was out and I felt well enough to wander about for quite a while. I sat on a bench a while and the snow beneath me did not even melt! It was pretty cold but the sun made it feel not too bracing. It was such a relief to get out of the house and to be able to seize the moment when there was sun and fresh snow. It was breathtakingly beautiful.

I took some photos on my phone, some of which i will post here. I took others on film so i have not got them yet.

And here I am in action with my holga! I did not take this one, evidently. Oh, it was such therapy!

(I don’t care how bad i feel as a consequence, it was worth it.)

Ok, so this is not health related, but i just wanted to highlight something about the US elections which, for me, takes the shine off a little…

I do not know much about the US elections, the politics, the electoral system etc. These things take concentration and brain energy that i do not have to spare, but this news really caught my eye.

It seems that the (slightly) more liberal voters who voted in Obama, may also have been voting for anti-gay amendments at the same time, how nice.

People are celebrating racial equality and how far things have come, but i feel things do not change overnight and news people really do talk some rubbish. On TV they are saying that America has moved on from it’s history of slavery and racial oppression i feel it is way to early to say that, never mind chanting “freedom! freedom!” If America had already moved on, then why would it mean so much to them to have the first african-american president? How about a non-white, non-christian president? How about a native-american president? How about an openly gay or lesbian president?

I am pleased to see that people are striving towards freedom, don’t get me wrong, i am pleased to see such passion for equality, but it needs to be for all.

I am not feeling very articulate today but wanted to post this now rather than when the hype has blown over!

I was reading this blog for ME awareness day, where “Signs” talks about the story in the media recently where a woman (Elisabeth) in Austria, was locked up in a cellar by her father, Josef Fritzl for 24 years, and how people find ways to survive under extreme suffering. It reminded me of Alan Johnston, the BBC reporter who was held captive for 114 days in Gaza. I saw a headline after his release and it really struck a chord with me. Like Signs, i am not comparing my life or how it is living with M.E. to being held hostage with an explosive belt strapped to me, of course not, but what he said about Freedom when he came out really made me think:

“You want to do everything at the same time, to read books and papers, go to the movies, go to the beach and sit in the sun, and eat and talk and all the rest of it” – Alan Johnston

Freedom, it seems to Alan, it just being able to do everyday things. When I read this list, I could not help but draw parallels to my own life, as these are all things that I cannot do (or greatly struggle with) sometimes. I cannot do some of these things for months at a time, maybe even 114 days…

Also, in interviews about his time in captivity he has talked about things that made it easier for him to cope, such as listening to the radio and hearing that people were trying to get him released and were thinking about him, and being allowed to watch football once. This is something that interests me as i have found great comfort and joy in small and simple things when at my worst. When life becomes very small and you feel cut off from the wider world, small things can take on a greater pleasure or significance than they otherwise would.

This also brings me to a post by Rachel yesterday called “one day i will…” where she thinks about all the things she wants to do one day (when she is free if this illness) that she is unable to do now and considers that that day may never come. This is something that everyone with a disabling health condition has to come to terms with, but for those of us with fluctuating conditions where there is no prognosis as such given to us, how do we think about the future?

I am often asked by doctors, occupational health, psychologists etc the same question: “How do you see the future?” I hate this question and am usually flippant in my reply these days, saying i have not got a crystal ball. The reason it is asked is, i think, to perhaps get an idea of my mental state, and also (definitely) to judge my motivation to get back to work, but it is not a question that can be answered simply. I am also asked if I get the same amount of pleasure, or joy, from things as i used to. This is something asked recently with ticky boxes on my CBT forms… but there is no box to tick for getting more pleasure from something. Sometimes when I have been able to do something that I have been trying to do for months it can provide such a sense of achievement and pleasure, far greater than it would have otherwise.

I am reminded of Rachel M and her photo for ME Awareness Day: Long Driveway where she describes how cut off from the world she can be and also her blog about meeting up with a friend: Big Day Out where she is so full of joy to have been able to go and meet up with someone and have such a nice time, and how it left her smiling for so long afterwards.

Lastly, I read “The Plague” by Albert Camus a while ago, which is a novel about a town in which an epidemic breaks out. The town gates are closed off and the inhabitants are trapped inside and no-one knows how long they will be there for and whether they will catch the disease. These people are trapped and living in fear and the book looks at how they respond to this situation. Some of them were just visiting the town and felt they should not be there at all, some of them are separated from loved ones and do not know when/if they will see them again. These sentences are taken from pages 67-68 (Penguin Books, 1960)

“…we returned to our prison-house, we had nothing left us but the past, and even if some of us were tempted to live in the future, they had speedily to abandon the idea… once they felt the wounds that the imagination inflicts on those who yield themselves to it…

…our townspeople very quickly desisted… of trying to figure out the probable duration of their exile. The reason was this. When the most pessimistic had fixed it at, say, six months; when they had drunk in advance the dregs of bitterness of those six black months, … and… straining all their remaining energy to endure valiantly the long ordeal of all those weeks and days… (something) would suggest that, after all, there was no reason why the epidemic shouldn’t last more than six months; why not a year, or even more?…

…Therefore they forced themselves never to think about the problematic day of escape, to cease looking to the future, and always to keep… their eyes fixed on the ground at their feet. But, naturally enough, this prudence… refusing to put up a fight were ill rewarded. For, while averting that revulsion which they found so unbearable, they also deprived themselves of those redeeming moments, frequent enough when all is told, when… they could forget about the plague.”

 This, to me really sums up the tightrope we (with ME and others whose freedom is compromised) have to navigate when coping day to day and dealing with the uncertainty of the future.

ME/CFS Awareness

ME/CFS Awareness


January 2020
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