Collection

I just have a collection of things I have been thinking about.

My husband frequently tells me that he has got me safe, and that God is holding me. Sometimes I find this easier to believe than others, but I like that they both have me and that I get reminded of that daily.

Good friends are better than any medicine.

The road ahead will contain ups and downs. If I worry about the next down coming it does me no good. I need to enjoy the good, and keep pacing myself through it all. I know that there will be full healing, I just don't know if that will happen during my time on earth or if I have to wait for heaven. But it will come.

Having wanted a sister when growing up, it is a privilege now to have sisters in law, especially those who care, who love and speak strength and love to me because they know from a place of experience about life being tough. Friends who speak into my life from their experience are also a blessing.

I like cake. And lemon crunch. And apple crumble. And ice cream. And toffee sauce.

There is light at the end of the tunnel. And I don't think it is a train approaching!

The Lord is my rock, my fortress and my deliverer;
    my God is my rock, in whom I take refuge,
    my shield^[b] and the horn^[c] of my salvation, my stronghold.        Psalm 18:2

Both

These last few days have seen both a big success and a big failure. Thursdays is my swim day. I am only in the pool for thirty minutes and there is not much zoomy swimming happening. But I really enjoy being in the water, it is the one time in the week that I feel normal, that I feel like myself. On Thursday I wasn't feeling amazing anyway, partly to be blamed on too much bad sleep and partly to be blamed on monster PMT (tmi?). I got ready to set off for my swim. I made the husband a cup of tea in his thermos mug and remembered to bring biscuits. This is because after he met me at the swimming pool he was going to church to do some man work with drills and things. I got my money ready and made sure I had all my swim stuff. Organising myself takes a bit more brain power these days so then I had a little sit down. I set of to the pool, the only time in the week that I drive at the moment. I had got about a minute and a half from home when I noticed the petrol light was flashing. Not on to let it me know it was low, flashing. Flashing to say it will very soon run out. I panicked, pulled over and rang the husband. He assured me that it would get me to the pool ok. But neither of us had any money on us to get petrol on the way back from the pool. He thought it would probably be ok, and if it did run out that wouldn't happen until he was with me anyway. But by that point I was panicked. Too panicked to drive the car. I used to drive my car until the petrol gauge was below red, I used to push it to see how far it would go on nothing, it was a game between me and the car. I used to enjoy it. Now the thought that there was a chance it could run out was all too much. I was too panicked the worry took the energy I had for swimming. So I turned round, went home, cried, and felt silly. What a failure.

Yesterday I knew I had to try a solo venture out of the house. If I didn't then going to my thursday swim  would likely instil panic and worry again. So I spent all morning convincing myself I really should. I must do it. I could do it. I had some things that needed taking to a friend that I was going to send the husband with at some point. I decided to take them myself. They live fairly near so I walked. It was the most nervy walk I think I've ever had, silly really, friends shouldn't make me nervy but that seems to be how it is at the moment. I knocked on the door, on answering it my friend said they were glad it was me, they were going to ring me that afternoon as they wanted to talk to me. It turned out to be very good talking, they offered some considered thoughts on the road I find myself walking at the moment. They asked the questions I kind of wished someone would ask, not that I necessarily had answers, but the questions showed the kindness I needed and the wisdom imparted was very timely. I left there, went home, feeling brighter, lighter, and slept well last night feeling more positive about me, about the future. What a success.

Confession

I am just listening to Simon Mayo's confessions podcast. They say confession is good for the soul don't they. Whoever they is. And that point at which I told the husband how I really feel, it felt like a burden had lifted. It brought new things to deal with. Like the reality of living life as actual me, not pretending me. Typing that last post helped a little too. Knowing that others will start to understand how I feel. For now, I try to work out how to be me. To live with, and deal with, the M.E., and the more recent feelings. I was planning to have a few weeks of not doing very much. Of spending time as me and the husband. Of working it through. Of not feeling the need to put up the front. And then the opportunity arose last night to share food with friends. Despite the thought that I just need time to myself, it felt right to see them. It had to act on those right feelings, even though doing so made me feel very nervous. Silly isn't it. Seeing good friends shouldn't make me feel nervous. But it did. Silly isn't it.

The thing I was most nervous about was the how question, how are you? I don't like that question, mostly because I never know what it means. Is it an extension of a greeting, hi how are you? Is it polite, this is what we should say, how are you? Is it a general give me a few word answer that summarises, how are you? Is it I care for you, I have time for to listen to a couple of sentences worth of answer but don't go on, how are you? Is it I actually want to know and will take time to listen, how are you, how is the M.E., how have you been sleeping this week, how is the joint/muscle pain, how are the headaches, how is the nausea, how is the irritable bowel syndrome been this week, how are you? I just don't know what that question means and so I don't know how to answer. At the moment I don't even know what my truthful answer to any of those types of how are yous.

Thankfully these lovely friends didn't ask that question at all. They just let me be me. It was lovely. We ate tasty food, we played a not boring board game. I felt the closest to human I have felt not just all week but for several weeks. We got hme well after my bedtime, but I didn't feel tired. I felt nice. I felt warm inside. I felt loved.

I still won't be going out much for a couple of weeks, especially not to places with multiples of people. That we shall work on and gradually build up again. Like we shall build honesty, confidence and hopefully health. One day there will be no more nerves at doing the normal, less worry about the how question, no continuous questions to the husband about what will happen when with who and will he stay with me the very whole time. One day there has to be a return to greater normality. There has to be.

tired

I am tired. Not tired as in I have M.E. and part of that is that it makes me tired. I am tired in that way, don't get me wrong, but more than that I am tired of being ill. I have had enough of this now. I have had enough of the nausea, the crippling headaches, the muscle pains, the joint pains, the not being able to sleep, the overwhelming tiredness, the inability to do things, the everything else. I've had enough. Enough of my life. Of the life that having this illness makes me live.

Just recently I have been very aware that life has become one big front. I put it on when I walk out of the door, or when someone walks through the door. It occasionally lowers when the husband is around. Occasionally. Even he doesn't see the whole of the inside. Until yesterday. Yesterday saw breakdown. It saw the front go. I told him just how I feel. He learnt how I don't really see the point to my existence. With life how it is at the moment I can't help but feel that if I wasn't here it would be easier for everyone. For the darling one who has to live with me the worry and burden of care would be gone if I were no more. I don't think people realise the effect me being ill has on him, how he actually needs as much care and support as I do but it being less readily available to him coz I can't give it to him and to those outside of the two the us focus always more on me, the ill one. I've done that to him. I've given him that burden. I've left him without the support he needs. Its my fault. The hurt and suffering he goes through at the moment, that is because of me. Because I can't manage to have a well body. Because of me his life is not as it could be. Doesn't have the lightness and fun and laughter it could have. Its my fault.

And outside of the two of us, I don't fit in. I don't work. I don't mother. People ask how you are, hows your day been. The answer is boring. The same all the time. No-one wants to know that the total sum of my day was doing the washing up and putting some washing one. How dull. And so I have nothing to offer conversation. Nothing to make me good company. Unless I put the front up.  But managing this front is just too exhausting.

Oh I know when I am in a more well phase I can be useful for doing odd things, for making up the numbers, for being given the sympathy invite. And when that happens I have to build the front again so no-one sees the inside. If they saw the inside they wouldn't be interested. Oh maybe the first time they would have a listening ear, would cluck their sympathy. But when it went on and on, they would lose interest. It would exhaust them. But keeping the front up tires me. And I'm tired enough already.

So what to do. The husband now knows what is happening behind the front. He is happy to stick around and help me work it out.  But being outside the house without the front seems too dangerous. I just can't manage that. And keeping the front up can't be an option right now. My M.E. symptoms are too bad at the moment to cope with tiring nature of front building and maintaining, of being the person I'm not so that others don't have to cope with the person I am.

I have no answers. All I really want is mum to walk through the door with a fish pie and we can watch Saturdays casualty together and life can be how it was. When it was fun. When it was safe. When it was easy and nice. But that isn't going to happen. Darn those scientists for there lack of time machine making. For now I feel like I just need to shut myself away. To be me and my Marky. To not see other people. To not be putting a front on. To be real to how I feel. It is too exhausting to do that around other people. I am exhausted enough already without that.