strange

Something strange has happened. Three weeks ago I was washed out. I mean like totally no energy. It was the lowest my health has been in probably three years. Two and a half weeks ago we were due to go on a children’s camp. As leaders I may add, not wannabe children. The two don’t go together, do they. My poor husband three weeks was hearing a lot of ‘I can’t go, there’s no point me going, I’ll be useless, I’m so not well I’ll just end up spending all my time in our room’. He dealt with it admirably.

We came to the decision that I would go, but only until Wednesday. That would mean Sunday lunchtime arrival, leaving Wednesday morning. OK. I could do that. I mean obviously I would be useless on camp. I didn’t have the energy to do anything. But not going would be being defeatist, so I’d go, prove I couldn’t do it and then go home.

The Sunday I was not good. A couple of times I had to take myself off because the tears in my eyes were threatening to spill out. I made it through to bedtime. Reassured myself I had two days of camp to get through, and then I could go home.

On Monday I woke up. Early. This appeared to be the pattern for camp, half past five was the latest I woke up. Waking up that early would normally mean a day worse than normal* day. So I woke up early. I rolled my eyes (without having opened them, a skill in itself) at the thought of Just. How. Hard. the day was going to be. I waited for the husband to wake up. Moaned at him a bit. Then decided if I was going to be awake I might as well shower and dress and pretend I wanted to be there. I don’t know if the strange thing happened during the (short) night, or during my shower, but as I dressed I realized I felt ok. That is ok** for me. And there was a little something deep down in me that wanted to be there. I managed to do way more that day than I ever thought possible. Maybe slightly too much, but when you feel you can and you realize you want to, that kinda happens.

By the end of the day I was remembering who doofas really is. Not the ill one, who has a tendency to mope a bit, feeling sorry for herself and all her perceived inabilities. No, the one who loves working with children, who is excited to know that God loves her and who wants others to know this too. It felt good. I felt good. And I still had the energy to carry, on through Tuesday, Wednesday (with a slight wobble), sit back Thursday (I stayed at camp while everyone else trudged off to Alton Towers), Friday and then home on Saturday. And I loved it.

But then comes the being back at home bit. The ‘I’ve used two months of energy in one week so now I’ll suffer for it’ bit. The ‘wasn’t I silly to do all that’ bit. The ‘mope around coz why am I still ill’ bit. I accepted that that was what would happen. It was inevitable.

Do you know what? That bit, it hasn’t come yet. I feel like I should whisper that last sentence in case that bit hears me and remembers it should be here. I am still better than I have been in a long time. I still have more energy than I often do. Not a fully well, healed, restored to normal lever. Still, more than I often do means being on the up. Especially after such a busy week. I’ve still been having naughty afternoon naps, and sometimes a little rest in the mornings. However I have been managing to do more than my norm. At eight o’clock last night I was still going. I made myself sit down, and told the husband he wasn’t to let me do anything else. I think I’ve forgotten how to stop when there’s still energy in the tank. Forgotten how to relax for the fun of it, not because I can’t do anything but.

I’m aware that this bit of up might also have a down. That’s par for the course with CFS/ME, but boy am I enjoying this up.

*normal: that is to say a normal day for me. This is a million miles away from a normal day for someone who is well.

**ok for me: this is probably being at about 50% energy levels etc of someone who is well.

Trust

Some things my head has thought today.

Worry less, trust more.

Somedays I miss mum with a heart full of happy memories, somedays I miss mum and my heart hurts. Today is one of the later.

When you meet with good friends you haven't seen for a long time, you just pick up from where you left off, like you only saw them last week. It feels like a glimpse of heaven.

Never do a cross stitch larger than three inches square.

I don't see my brothers and their other halves and my nephew enough.

We are blessed that the husbands wage gives us a roof over our heads, bills paid, food, and the blessings of a holiday.

I love doing children's work.

Socks

Dear socks,

I apologise for your current abandonment. I can assure you it is nothing you have done. Many of you may have been sporting thin patches and holes of late, but that is not the reason you have been holed up in the sock drawer. You see something rare has happened. It is something my memory tells me used to happen every summer, but my current memory has little data pertaining to this event. The event in question? A prolonged period of sunshine, and therefore heat. This has led to a limited need for you, my dear socks. Until this point you were very ably doing your job of keeping my feet, toes and ankles warm, and of stopping my shoes becoming a cheese fest. But now, well my feet are too warm for you. The air around my flip flops, and the non absorbent material they are made of means my flip flops are less bothered by foot perspiration. Maybe I should get you out of your drawer and take you on outings, you are just not used to being unneeded for this amount of time. Maybe the need for double sock layers the cold winter gave us has actually left you grateful for the break. Whether the case or not dear socks, rest assured I do love you, I do need you, I do appreciate the great job you do. Just not right now. Enjoy your holidays. Send me a postcard if you go anywhere nice,

With lots of love,

 Your dear wearer,

Doofas

Dreams

So part of the old M.E. is a lot of broken sleep, and vivid dreams, the latter probably part of the cause of the former. Mine had been getting really bad, especially some nasty bad dreams. I would either wake in tears, or convinced someone was in the house, or trying to break into the house, or something along those lines. Ofttimes I would either wake the husband during the dream as they would make me  agitated and call out in my sleep, or I would wake him when I awoke for reassurance. About four weeks ago I had woken up after the fourth of these dreams. I decided I had had enough of them. So I told myself, I'll ask them too pray about this at home group on Wednesday. From the moment I made that decision, I have not had a single bad dream. And in the last week I have had no vivid dreams. On top of that I have been sleeping more soundly, last night saw a record six hours straight sleep! Thank you God.

While

It has been a little while since I've written in here, in part because I am wondering if I carry writing on here or not. For now I am just  leaving a note to self : Doofas, it will be ok and you will be ok.

Casualty

I used to love Saturday night TV. Gladiators was a firm favourite with all the family, we were even sometimes allowed to eat our tea while watching it! Naturally, we had to have our plate on a tray to reduce the risk of spills and crumbs. Casualty is the other Saturday night show that I remember fondly. My brothers would use the time it was on to take advantage of their half an hour of computer allowance. They were allowed just half an hour on a Saturday, I'm not sure they were allowed to play on it at all in the week. They often chose to take the time during Casualty because they knew that mum would get absorbed by the TV and it wouldn't be until the fifty minute show was finished that she would tell them to get off the computer. If they could feign not hearing well enough they would eek out another ten minutes, allowing themselves an hour in all. Dad didn't watch Casualty, in fact would have to sound the Casualty warning alarm when it was time for the show to warn him not to come in the room. Not because we objected to him watching with us, but because he cannot stand anything to do with blood, even the fake stuff on TV. He once, as a student, gave blood as he thought it was a good thing to do. He fainted after. They had him lying out on one of their beds for so long after giving blood before he was able to go home that they told him never to go again. So the Casualty section of a Saturday night was mine and mum's special time.

In recent years I have rarely watched Casualty on a Saturday night. I have not fallen out of love with the show, I have instead chosen to watch it on catch up. This, at first, was due to Saturday night busyness, more recently has been a combination of it sometimes being on after I'd gone to bed but mostly as the husband does not like the show. So I watch it at some point during the week. I have just watched the most recent episode. It involved one of the main characters leaving. When one doctor leaves, another needs to arrive. The show ended with a trail for next weeks show, the doctor arriving. As I saw who it was I exclaimed (aloud, despite home alone) 'It's Ash!' I was highly excited, one of our favourite nurses from good old Saturday nights had come back having retrained as a doctor! I went to find my phone to ring Mum. Before I got to the phone I remembered why that was not possible. I say I remembered, more I was kicked in the gut with the reminder. People say that time heals, I don't think it does where grief is concerned. I think that in time you learn to live with the hurt, to a point where at times you don't feel it. And then something happens, a memory, an event you wish they were at, a person you want to tell them about, something that happened that you know they would find funny, and the pain washes over you again, as fresh as the first day you felt it. Time doesn't heal, it just helps you learn how to live with it.

Lists

I am starting to have to live by lists again. In the past I have used lists as a means to a helping improve health, and we are back to using them again. I was finding that I had little motivation to do things during the day. So, being aware that I probably had the energy to do more than I was motivated to do, we resurrected the daily list. The first time we used daily lists the list would contain everything I needed to do that day, eg get dressed, as well as things I could try to do that day, eg wash up. This period of list making sees me more well than last time, so things that I need to do each day don't make it onto the list, just things I need to aim to do or would be nice to do. This is helping me to focus my time and energy and balance physical activities, mental activies and rest. My lovely husband writes the list each morning when he gets up, having first consulted my cleaning list and things to do this week list. He is better at the daily list than me, ifi were to write it most days would contain 'make cake' and 'eat cake' and very little else. I am finding I have a better balance to my day, and more energy to do a bit more.

Today's list.

Snow

We have just had a weekend of highs and lows. On Friday we travelled back to my home town. The husband had a half day from work, but when it started to snow they told him to go and get on the road, so he came home early and instead of our plan to have sme lunch and get going, we just got going. I chucked a load of snacks in a bag, made up some hot and cold drinks and put a big bottle of water in the car. The traffic was great on the way, very little snow fell, the roads were clear. Lovely. We had a game with my dad and his wife, ate some tasty food, and then got back in the car. Oh no we didn't. Oh yes we did! You see, we headed off to the road and roll panto that happens in my home town each year. It was fantastic, probably the best we've seen. The husband told me off a couple of times for laughing too loudly and for too long!

We went back to my father's house for a good nights sleep. Upon waking we helped make and eat a tasty cooked breakfast, made all the better by the presence of my brother, sister in law and nephew. We put on out glad rags and headed to church. Yes I know, church on a Saturday! We were going for one of the few reasons a person goes to church on a Saturday - a wedding! This was the wedding of my much loved uncle. It was a fabulous wedding, different from any other I've been to. My highlights were the personally written vows and the superb jazz version of Amazing Grace. Afterwards we got to chat to lots of people we don't see very often, and were entertained by some very gifted musicians, including my uncle singing the song he sang when we signed the register at our wedding, chosen in part because it is on my mum's favourite album. Cue a few tears from the silly old Doofas.

Post wedding a load of people headed back to my dads, including my cousins and we had much fun, merriment and take away! I absolutely loved this part of the weekend, it felt properly like old times. I've also found recently that I've been feeling a bit more like the old Doofas, more like me, and this time just made me feel more like the Doofas I thought I'd lost.

Another good nights sleep saw us waking in readiness for church. I copped out of the sermon and went and joined my friend who was leading Sunday School. I loved it! I sometimes wonder if I will find children's work as part of my life again. Following this morning I do hope so. We then went for lunch with one of my favourite family's. Snow had started to fall before we got there, so we decided we would eat and leave. This we did, and so started the not so fun part of the weekend.

The roads were horrible. There were several idiot drivers out there. We managed to follow a lorry for quite some time, driving in his tracks. Then a car three in front if us spun on ice, and managed to take out the whole of the front of the car. Thankfully the driver wasn't injured. The driver of a gritting lorry that happened to be there pulled the car into the lay by we were just near. We were shaken. We realised how fortunate that driver was not to be injured, and how fortunate we were it wasn't us. The snow kept falling, the road had disappeared under the covering of snow. Then the lorry we were following turned off. We became the front car in a long line that had been following that lorry. There were no lights over the road, no lights of cars ahead. Just darkness. Darkness and snow. We decided it was not wise to carry on. We value our lives more than getting home. I rang my father who after checking in his computer told us that Kettering was the best place to turn off, only one junction away from where we were. We turned off, made our way into Kettering and on spotting a B and B, parked up in the next road and got our coats and hats on, and picked up our bags. We trudged back down the snowy road to the B and B. A sign on the door told us they had no vacancies. We knocked anyway, and the lady who answered the door confirmed they did have no vacancies, but directed us to the nearest establishment that may have spaces. This was a ten minute walk away. A ten minute walk in normal circumstances. Not a ten minute walk in snow carrying bags. We trudged our way through the snow and thankfully found a place with rooms. The relief was immense. We had a nice room, thankfully had things to eat for tea and breakfast as I had packed so many snacks before we left. We slept better than we thought we would, and in the morning squelched back to the car, glad that the roads were clear, the snow had stopped, and that we could get home. A definate weekend of two halves!

seventh

So I believe the seventh day of the first month of the year to be a traditional time to look back at the year just gone and look forward at the year come, isn't it? And so with my new trying to practice an attitude of gratitude I look back at 2012 with extreme gratitude for those who rejoiced with us in the good times and helped support us as we limped through the trickier times. We had a great first half of the year, and a trickier second half. When I think of 2012 one of my definite highlights was a trip to Great Yarmouth that the husband and myself took. We were only there for a weekend, we enjoyed the beach, shops, circus and watching some of the Olympics on a small grainy TV. We had a great weekend, but it is a highlight of mine because it came at a time when we greatly needed a break, a bit of time of away from normal life to be able to get some perspective on what we were dealing with at the time. However at that time we couldn't afford a break. I am extremely grateful to the husbands parents, my dad and some kind friends who between them paid for somewhere to stay, petrol and gave some money for us to have a meal out/do fun things with. We needed it. We couldn't manage it alone. But with the support of those who love us we managed it.

We couldn't manage it alone. This is a sentence I could write about much of what seems to have happened in the last six or so months. Thankfully we didn't have to manage alone. We have had many of those we love to walk this journey with. Things are a lot better than they were in late Sept/early Oct when I was unsure if I would ever be me again, when I wasn't sure I could handle life any more. There is still a bit of work to be done. Much of it will be done by focusing on all I have to be grateful for, and by stopping wallowing around bemoaning what I wished I did have. An attitude of gratitude. I am determined that this year will be a year filled with gratitude. Gratitude and nail varnish. Well every girl needs as much sparkle as she get in her life!