Work

Well these last two weeks have been busy busy busy! We have had seven days where we've had workman, sometimes two at a time. This means the house is way more sorted than it was. We have two bedrooms left to decorate and carpet and an extractor fan to have put in the kitchen. Then there is some stuff to do in the garden if we have any money left for it.

I am now working again, well doing Avon, not sure if that really classes as work or not. We wanted to see if I could cope with having some regular stuff to do to know if I could manage a job with regular hours every week. At the mo I only have a little round so am hoping that friends and family will order some stuff so that I can actually make some money from it. Let me know if you want a catalogue! It is nice to know that I will hopefully be bringing some pennies in, even if it is just a small amount, helps with the old self-confidence.

house

Well the work in the house is suddenly getting done quick quick quick! By Wednesday we will just have two bedrooms to do - and a little curtain to make. It seems to have suddenly gone from lots to do, to not much left to do. I have, fortunately, been really good this past couple of weeks - we think the best I've been in about 2 years. I'm still a fair way from being completely well but it is really nice to be this well. Still can't drive very far, but am able to do a lot more during the day and often carry on doing things into the evening which is really lovely. This weekends big job is to move nearly all of the downstairs furniture/stuff upstairs ready for the carpet man on Monday. It is all squeezing into two rooms as the whole of the rest of the house is being re-carpeted. Fun times!

thanks

I say 'thanks' to those who sent some thoughts following my last post. As was highlighted to me, getting married changes who you are, and you don't have to be the same you you were before. I had thought a bit about both those things, but it was helpful to be able to think a bit about who I was. I'm a firm believer that life experiences change you, but to know where you are going it can be helpful to know where you have come from/been. So thank you to those that have been helping with all these thoughts.

This last week I have been the most well that I have been in at least two years. It has been lovely, although at the same time a little frustrating as I know that I can't quite use the wellness to the full otherwise I'm at risk of being not so well. But to actually be able to do things most of the day through has been wonderful, a little peek at what we hopefully have to come when proper wellness comes to reign again.

who

A question I have been asking myself of late is 'who am I?' The more well I get, the more I realise I have lost myself. I have got so used to poorly me and who that is. The limitations that has brought, the capabilities (or incapabilities) that I have had, the physical, emotional and spiritual effect it has had on me. And so I come to wonder 'who am I? What makes me me?' I am not sure I have an answer to these questions, because the only answer I have is the one that relates to poorly me. So I was wondering, do you have an answer to this question that relates to well me. I need to know the good and the bad. I am trying to piece myself back together, but to do that I need to know who I am.

decorating

The weekend saw a flourish of decorating. The Husband decided that Friday night he was going to wash the walls down in the little bedroom ready for him to paint coat 1 on Saturday and coat 2 on Sunday. He washed the walls down and we found ourselves painting coat 1 on Friday night. Saturday morning saw a swim (for me) and a trip to B and Q (for him) Followed by coat 2. This done we decided we could maybe tackle the woodwork in same room. So Sunday morning before church it was sanded and after church it had its first coat. Feeling ourselves to be on a bit of a roll we decided to also tackle the bathroom. This involved stripping the wallpaper first. So The Husband did this, then washed the walls down. This took longer than first thought. We had a big sit down, felt too tired and decided to leave the paint until this morning. However, our thoughts were all changed after some donut consumption. I felt the need for cake, and we had none in the house. A little walk to a local supermarket found us purchasing and consuming donuts. The imbiding of this sweet treat gave the energy to do a little more, and so the first coat of paint was applied to the walls Sunday night. A second coat shall be put on this afternoon, and the bathroom will be complete. The second coat of gloss in the little room shall wait until Tuesday (this will be my job and however well I feel I have to ensure I don't overdo it). Then we have two more rooms complete. The downstairs toilet/sink is being replaced as I type, a new built in cupboard is being created next week, and the week after the hall stairs and landing and door frames are being painted. This will just leave us with carpet to buy and two bedrooms to tackle. Oh and the garden. But we are not even going to think about that until spring time.

phase

We think we have re-entered a good phase. The weekend was on the busy side for us and I have suffered no repercussions (well other than the muscle ache of planting many bulbs). To add to the busyness I've not been sleeping brilliantly, two things that should wipe me out but so far haven't. We are praying that they continue to not wipe me out and that I can carry on with normal life. Well normal for me, I'm aware that normal life for one with CFS is different to that of most people! This week sees continued busyness, and I suppose I should add to that routine things like cleaning coz that's the kind of thing that gets dropped in the not so good phases.

tape

When my father last visited he bought with him a tape of his and my mum's wedding. It was a spare copy (I think it used to be my Grandparents) and he kinda subtly handed it over as his new wife was with him. I put it on the shelf and forgot about it until yesterday. Yesterday I pulled it out and put it on in the background while I was doing some other stuff. The other stuff soon got forgotten and I listened avidly to this tape. Mum and Dad both sounded so young. They were in their mid-20's when they got married but it sounded like it could have been ten years earlier. As well as being able to hear my mums voice again, when I flipped the tape over to the speeches on the other side I heard my Grandad's voice for the first time. He died a year before I was born, four years after mum and dad got married. He, and Grandma who died five years later, were not spoken about that often in our home. I think it might have been mum's way of coping with losing them both. It was the first glimpse I'd really got into what he was like. He sounded so warm and friendly and fun. I wish that I had been able to know him. I sometimes feel that having not known my Grandad and having no memory of my Grandma has somehow left me not quite fully knowing who I am. I look at my siblings and cousins, and at who my mum and auntie were and through that catch glimpses of my Grandparents but this tape was one of the first times I've ever felt I've known either of them in any way. It challenges me to try and keep memories of my mum alive, to not forget or let others forget who she was.

complete

So the decorating of the kitchen is complete, and I love love love it. It feels so much more like it is our own than before. The more we make this house our home the more I love being here. I love having a bit of space. I love having room for people to stay. I love that we are putting our own stamp on it. I love having central heating. I love being near friends and family. I just love it. It is a much nicer place to be poorly than the last place. And recently I have been a bit more poorly. I've had some strange abdominal pain and the doctor has ordered some tests to try and work out what is causing it. In the meantime I've been put on anti-biotics in case it is an infection. However my body is having some adverse reactions to the anti-biotics which is making the CFS worse. It's not really badly worse, but enough for me to have take a bit of a step back for a little while. Which actually gives me more time to get crafty, can't complain!

paint

The main job for this weekend is to paint the kitchen. We have spent time over the last two days cleaning the walls and ceiling - a tricky job as the previous owner of this dear house used to smoke and fry food a lot. We found a solution to the ceiling cleaning carefully using our wallpaper steamer. This had to be carefully done as the steamer will remove artex if left on it for too long. Today while the husband is at work I will lay cloths in the kitchen and start on the walls. I am having to be slightly more careful of how much I do at the moment as my body has decided to throw other illnesses my way at the moment, most noticeably a shore throat and a funny pain in my side, the latter of which the doctor is running various tests to see what might be causing it. In most people a poorliness would slow you down a bit, when you have CFS you have to make sure you slow down more so that the CFS symptoms don't increase as your body fights the other ills. In other news we have done all of our Christmas shopping, and as presents wait to be wrapped I get to sit next to a fair few Yankee Candles as I type this. The smell of the unlit candles is amazing. If anyone ever wants to cheer this doofas up a Yankee Candle would go a long way to doing that. I am tempted to not wrap these presents until the last minute just to benefit from their fragrances.

pots

I realised this evening that I was starting to feel better because after dinner I wasn't thinking 'I just need to sit down now'. Instead I was thinking of jobs that needed doing and doing them. Sorting the shopping and putting the pots away were jobs that were un-doable at any point of the day at the beginning of the week. Today they were jobs that were done post-dinner with energy to spare. So now I can look forward to the weekend knowing that I will be able to manage a bit of Christmas shopping on Saturday as well as be able to see some fab friends on Sunday. Hooray for being more better.

struck

Over the weekend I have been struck down by some throat/gland affecting bug. It's of the level that in the real world I would be able to carry on as normal, but in CFS world I have to slow life down even more. Saturday I was able to do this, spending most of the day on the sofa. Yesterday was the baptism of a most lovely lady at church in the morning, and a kinda leaving do for us in the evening. So yesterday was spent more busy than it maybe should have been. So today become another sofa day. With maybe a little bit of washing thrown into the mix coz doing absolutely nothing is not good for the CFS. Thankfully the husband agrees to this course of action, which means lots of hugs when he gets in from work and dinner cooked for me. I am blessed.

heart

Since being poorly I have felt little passion in my heart. I used to know my hearts song well, things I was passionate about, things that got me excited, things I had to be a part of. But the CFS seemed to take that away. Whilst draining my body it also drained my heart. I didn't long for anything, I didn't hurt for anything, I didn't want to be part of anything. However the last month or so my heart has been singing again. I have been able to dream and long to work with children once again. I have seen or been involved in things that make my heart love and long and ache. It is exhilarating and painful at the same time. Exciting to want things again, to want to be part of something, to long to be involved. Hurty that I don't have the energy to do so in the way I might want, or have been in the past. But we have a plan. Once settled in new church there should be opportunity to be involved in small ways in things that sing that my hearts song. Knowing it is coming is allowing my heart not to hurt so much, and letting its song grow louder.

ten

In the last week I have gone to bed after 10pm on four nights. Not abnormal for most people, but unusual for me. Normally its bed by half nine at the very latest. I have had no increase in my CFS symptoms. Just saying.

freinds

This afternoon we had the privilege of spending some time with the loveliest of friends, and they reminded me that I don't write on here often enough. I'd been having a few things running round the back of my brain that I wanted to write, but I couldn't quite work out how. I'm going to write about those things some other time because right now I want to pay tribute to fab friends. There are some people I spend time with that are just draining. I leave time in their company feeling like I need to sleep for a week. Some people, however, are the complete opposite. Time spent in their company really energises. I might be having a rubbish day, but seeing them picks me right up. And so when Mrs R rang this week to see what we were doing today, despite being at a noon wedding and the evening reception (normally enough to see me off in one day) I jumped at the chance of meeting for coffee. Because these are friends that energise, whose company is easy and fun. Seeing Mr and Mrs R and their heavenly child has added to my day, not left me heading for bed. These are the kinds of friends that aid my recovery. I have not found many people that this is true of, a few people in our home town, and a few friends from my old home town. I am extremely grateful for each and every one of them. I would be more poorly without them in my life.

good

This week has been a good week. I haven't always felt tip top, but overall I have been ok mentally, which seems to make a huge difference as to how I cope with what my body is doing. We have painted a room this week, I slightly overdid it as I find painting quite therapeutic. Inevitably I have then paid the price, understanding why has made it easier to deal with though. I find that the hardest dips that I have are ones that I can't explain, where I can't work out where they have come from. The beginning of the week saw the boiler being serviced, the end of the week has seen the guttering be replaced. The latter will have a bigger impact on us. The old guttering was full of soil, the eight of which had bent it, meaning the water ran back on itself rather than down the down pipe. This lead to the gutter over-flowing. Right outside our bedroom window. Drip, drip, drip is the noise you would hear all night even if there was only a little bit of rain. I would check the weather forecast before going to bed, if it was due to be very wet, I would go to bed in the spare room. On nights spent in our bed I would often be woken up with a dripping and move to the spare room (this caused much confusion to the husband come the morning.) This week saw a first in our married life. The husband wakes up at 5:20am weekday mornings. I wake up when his alarm goes, sometimes I turn over and go straight back to sleep, other times I'm awake for a while. On Wednesday I didn't wake up at all when his alarm went! I wasn't half confused when my alarm went off.

liberating

As previously mentioned, when at Greenbelt there were some things that I went and did on my own. Now to most people this would just seem normal, like the thing you do all the time. However, for me, it is not normal. I realised that I very rarely go anywhere without the husband. I have a little ten minute walk in the morning and then I don't go out until the husband is home. Realising at Greenbelt that actually I could go and do things on my own and it was ok gave me a bit of a revelation. If I can do it there, why can't I do it at home? So since we've been back I've been going out and doing a few things by myself. It has felt really liberating. It is such a normal thing to do, and yet I didn't. I had let my illness take away my freedom. Now I am claiming my freedom back. I was talking to brother the younger about this, and his reaction was 'you are just like a normal!', and I thought, yep it does feel like doing one of those normal things that people normally do. I am claiming back normality!

greenbelt

Well the last couple of weeks have been much better. We were at Greenbelt last weekend, and I managed to do loads of stuff. And so this post is mostly me listing things so that when I can't remember who I saw I just read this to remind me.

I saw lots of friends that I don't normally see, some that I knew were there and others I didn't. Most didn't ask the what are you doing/when are you going to be working again, and those that did it didn't bother me to much. And I must hello to Heather, 'hi Heather'.

Friday.

The Hub, Mark made his Kings Speech. It made me laugh.

Wandered a lot and looked at interesting things

Paul Kerensa. A very funny look at Exodus. I had forgotten it was going to be about Exodus, and when he started and reminded me of that I thought it was going to be a bit dull, and then it was really funny.

Saturday.

First thing we saw Steve Price, a magician. Very good and very funny. It had been billed as being part of the all age programme, consequently we were the only childless adults there, but it really was an all age show.

Looked at art, some of which I was doubt was art. Was in two galleries, one was a methodist art collection and that was the strangest art. The other was where we found Pip, and the art was slightly better.

Contributed to the peoples Bible.

Shooting Economics. We went to go to a youth work seminar, went to the wrong venue, ended up in one on economics. We ate our lunch while sat in it and then left.

The husband became a BBC weather presenter, and did a rather good job at it

Folk On. Comedy folk music. We sat outside the venue as it was rather full, but it sounded good and we were there it Rich and Amy, so it wouldn't have mattered whether we could hear anything or not as we were in the company of friends.

Paul Bell. Musical man from Sheffield. Especially liked his songs about romance and biscuits (2 different songs). We had made it into the performance cafe by this point.

Soweto Kinch, musical act on main stage. This is one I done on my own. I only caught his last three songs, but I enjoyed them very much - especially Stroke the Hippo. It was music that made your rib cage vibrate, I like that.

Gentlemen's Dub Club. Main stage again, on my own still. Very enjoyed, but I couldn't stay til the end of their set as I was in need of bed.

Sunday.

Chilled out at the Tiny Tea Tent with lots of friends

IDMC gospel choir at main stage. Really good.

Frisbee golf. I was only going to watch Mark play, then when we got there I decided to join in. I beat him by 4, and set the course record. It was a lot of fun.

The Homing Instinct. A talk in the methodist run tent. We got there early and so got to sit on some very comfy bean bag seat things. They were giving out little bags with a leaflet, some cookies and some tea bags. The cookies were all chocolate so Mark was happy. The talk was really good, in terms of where we are at the moment with moving church, having moved home recently, future plans for where to live and what to do having change it helped us make sense of whats going on in our lives.

Steve Price. The magnificent magician was doing a different show so we went to that too. Gave the gospel using magic. We loved it.

Gordon Gano and the Ryan Brothers. Music at main stage on my own. Only caught the end, really enjoyed it.

Duke Special. More people were there to see Duke Special than Gordon Gano. I preferred Gordon.

Monday.

G music, listened to a guy but I don't know who he was.

Fischy Music, at main stage. Enjoyable.

Pru's cafe. Saw Pip's doors and road signs.

Hope and Social. A musical act with trombone, trumpet and sax. They all wore blue jackets. And were really good.

Musical Comedy showcase. Several acts form over the weekend who do funny songs. Was really really good.

Kate Rusby. I caught the end of her set, was good.

Wandering with Amy round various stalls.

The Unthanks. We waited for ages for them, had to endure an interview with the chair of the Greenbelt trustees who was a bit of a plonker. When they started we realised they were too soporific for the amount of tired we felt.

bad

Yesterday was a bad day. I don't think either of us realised quite how bad until the husband came home from a meeting to find his doofas curled up in the spare bed unable to explain why there were tears or why she was in the spare bed.

I am determined to make today more cheerful. I know that these silly emotions come from within, but I also know that what I do and how I allow myself to think affects these silly emotions. So today I am focussing on things I am thankful for, people who make my life a million times better just by their presence in it and on being a positive person. I am not letting this illness rule my life and my emotions, I am not letting the silliness of others affect how I feel, I am not focussing on what I don't have. I am being grateful for the immense amount I do have, for all the love in my life and the many blessings I have. I mean how many people go to bed hungry, having to have drunk water that could make them ill and with no real roof over their head. This has never happened my whole life, if no where that is a good place to start your thanks with doofas.

lost

I feel a bit lost at the moment. It happens whenever I get a bit more poorly. I am more poorly now as a result of over-doing it (which is kinda good coz it means the being more ill has a cause and isn't just one of those thing). I am also recovering relatively quickly from the being more poorly (which is good as it means overall I am getting better even though I am more unwell at the moment). The lost feeling comes when I just don't know where I fit in the world. When I feel undefined as a person. Although I know my worth comes from being God's child, as a human it is hard not to feel ones worth through what we do. When I am more poorly what I do is essentially not a lot. When I am more well I can start to see that I might work again one day, I might have an answer to the question people you have just met, or people you haven't seen for a while, ask. I will be able to say I work at...., I do...., rather than I sit around a lot and try and get better. Often people talk to me about going back to work, I let them talk about even though I have no idea when it will be, or what kind of work it will be. Those people that talk to me about it always seem to have some good idea about what it should be and when it should be. I manage not to tell them to be quiet because I learn that people often feel the need to have their say, or feel the need to be helpful by 'encouraging' you. I don't find it encouraging. I find it a reminder that I am lost. That I have no idea when I will be able to return to work. That I have no idea what work I will end up doing. I desperately want to be doing work that reflects my hearts song, but I know I have to be very much better for that to happen. So for now, 'what do you doofas?', 'well I sit around a lot, and I will justify that by the fact that I am (still) unwell, however to help define myself in your eyes I used to.....'

Fog

I am a bit full of brain fog at the moment (along with a major headache and feeling like I'm walking through treacle). Tomorrow we are off to Soul Survivor with the youth of the church, it should be a really good time and I am hoping this little patch of eurgh passes quickly. I do find that patches of eurgh do tend to go more quickly than they used - hopefully a sign of general getting better.

kitchen

So we had our appointment to sort the kitchen. It turns out that even with a lot of discount the whole thing comes to the amount we have left to do everything that needs doing in the house. So it is kitchen, or be able to decorate, have enough sockets to plug things in, be able to put lawn and plants in the garden, have a decent shed, etc. Needless to say the kitchen did not win. We will get a new oven to replace the funny old one, and put a couple of shelves up and that will be kitchen done. To be fair, the current kitchen is not that old, it is just that there is no under-counter space for a freezer and the oven is old. We think we might use some of the money we save to get a decorator in to do the hall/stairs and maybe some of upstairs.

You may recall I was having a little difficulty with my shoulder a while back. This has carried on, and we found out last week that my right shoulder frequently semi-dislocates. That explains a lot. There is nothing that can be done for it, just take painkillers when it gets bad. I had said to the husband before we went to get the x-ray results that I wanted them to show something, at least it did that.

settled

We already feel really settled into the new house. Everything is unpacked, most things are in the place they will stay. I have a few things to sort through and work out whether to keep or not (like photos, do I really need every picture of every animal I've taken on zoo trips?) We are going to do an ikea run next week to get a table, sideboard and new sofa cover to replace the one that went mouldy in storage. We have an appointment at homebase at the weekend to plan a new kitchen (half price and then an extra 15% off, can't say no to that!). And then we just need to get an electrician in to fit some extra sockets and we are ready to decorate. In fairness there is nothing that needs decorating, but we would rather get a fresh coat of paint on the walls before we get too settled in. We are going to be boring beige the whole way through and then use curtains etc to add colour - will make it easier and cheaper all round. I love living here, and I am no longer living on the sofa which is doing my health no end of good. The husband says he can already notice a marked difference in me.

new

We are all in the new house. Thanks to our army of helpers we have more unpacked than I thought we would by this point, which is lovely. I have realised that a lot of the things I had put in storage just over 18 months ago I probably don't need any more. Many of them were things that we kept thinking that if I had six months of not working I would then be ready to start work again and so I kept lots of work stuff. However, even though I am close to be ready to start work again, I am no where near ready to do the kind of job I used to do, that is a long long way off if it ever comes. So a lot of the work stuff is now going to be recycled or thrown. We have decided to try and not put things other than furniture in the spare bedrooms, so that if people need to stay for short or long periods it can feel like their own room and not a bed in someone else's room.

overdue

This post is overdue, my apologies. It is in part due to a weeks holiday, and part due to laziness.

The holiday was spent in Devon, we had a lovely time - the weather was just right and we managed to get out and about a fair bit, I did more walking than I thought I would be able to and the rain/wind only kept us awake for one night. It is amazing how much louder the weather is when under canvas! While away we got to see some very good friends and it was fab to be able to spend time with them.

Whilst away we heard that contracts on the houses were about to exchange and a moving date had been set. We found this out as we had an answerphone message from our mortgage advisor asking if we knew what we doing transferring money. We couldn't get back through to him, so rang the solicitor who very casually told us contracts were exchanging and a date had been set. We wonder when she would've got round to telling us if we hadn't rung! We actually came back a day early from holiday as we knew we the husband having the Monday off, returning on Sunday gave us a day to get things sorted. We are now in the throws of packing, the trouble with being in such a small house is that there is no where to put the boxes once packed. Although the upside to having a small house is that we have less stuff in it.

I haven't been so well of late. It started a couple of weeks before holiday when I overdid for a week and then have been paying ever since. I was improving before holiday but we knew that after holiday would see me have a dip, unfortunately with now having all the house things to do I can't have all the rest I need and so it will take longer to get back to the point I was before.

I have found, as I often with big life things, that I have been missing my mum a bit more this last week. It just feels strange not having her around to chat to and to check with things like at what point should we pack the kitchen, how clean do we need to leave the house, what should we leave to take in the car. Those kind of things. And I know she would've spent a few days here helping us to pack and allowing me to rest up a bit more. What a good job I have the wonderful husband to be my companion through it all.

grumpy

Yesterday was grumpy Wednesday. Everything was making me grumpy. Even the weather being nice was grump inducing. I was grumpy that I'm not on holiday, I was grumpy that the husband had driven work, I was grumpy that we are still living in this silly house, I was grumpy that we went over an hour in the car park, I was grumpy grumpy grumpy. And of course the husband bore the brunt of the grump. Sorry hubs. Today is more cheerful Thursday. I slept wonderfully last night. Probably mostly because the husband slept downstairs (not because we'd fallen out, more to try and let us not disturb each other in the night.) I didn't get woken by himself pushing his pillows in my face, or trying to clean imaginary rubbish out of the blinds, or funny not quite snoring noises. He didn't get woken by coughing, getting up for the loo, etc. And I didn't get woken when he came to bed or when his alarm went in the morning. I do love a good night sleep. We both look forward to being in the new house and using a bit of the wedding money to buy a bigger bed and having a big enough bedroom so that we both have a side to our bed. Anyway, that was a slight night time tangent. So yes, I woke up more cheerful, and I am determined to be more cheerful throughout the day. For the husands sake if nothing else.

naughty

I have been a naughty girl this week and overdone things. I was trying to make up for the things I couldn't do the week before when I was laid low with a cold. I thought I had got the hang of this pacing thing but clearly need to remind myself of the concept again. So now I am a bit more poorly than normal. Silly Doofas.

normal

I think that there are times when we find it hard to cope with the not normal in life because of the expectation we have about what normal is. I have had the privilege over the course of my life of meeting and getting to know many different kinds of people. From those people I can't define what a 'normal' person is. There is no such thing. And yet when someone is not what is perceived to be normal that person, or their family, struggle to deal with their life, and how they fit in the world. A lot of my low moments have come when I mourn normal life and being normal. But that is by societies definition of normal, which has also become what I view as being normal. It involves being able to go to work, do housework regularly, cooking meals most days, socialise regularly etc etc. If I try to view my life now, and how I am now as my current normal, my acceptable way to live for me, it causes me less stress. If I can redefine my normal and not worry about I feel others expect of me it helps me to feel better because I am more accepting of who I am, who the illness has made me.

I started to think about this following a conversation with a friend whose child has extra learning needs (I think that is the correct term). A lot of their frustration with their child and how they function in society is because they are not normal. They do not function as a normal child does. However who they are, what they achieve day to day is normal for them. Whether they managed to sit on the carpet at school for story time, or ran round the classroom pretending to be pony (that is if they even made it to school), is normal for them. And yet because it is not normal for most people it is frowned upon. We are told that children should be able to sit still and listen to a story. So the child that kind is said to be showing non-normal behaviour that needs to be challenged and changed. (As a slight aside, typing that last sentence has made me wonder whether when children are described as having 'challenging behaviour', it means that their behaviour is challenging to those who care for them, or the behaviour needs to be challenged by those who care for them to make them become more normal.) If we start at the point that the person is normal and how they function is acceptable then how we care for them changes, rather than expecting them to become the normal that society expects of them and forcing (or encouraging) them to do things that are too far outside of their normal. I realise that if behaviour is damaging to the person or others it needs to be challenged, but if it is just who that person is, does it need to be challenged? Can they not just be allowed to be who they are and function as they are?

throat

Right now my biggest battle is a sore throat that keeps on coming and going. It is a common symptom of CFS, and one that I had a lot in the early days. However the last few months it has barely been a problem until a couple of weeks ago. And so I am drinking a lot of honey and lemon, taking pain killers when needed and having to rest up a bit more than sometimes. That said the last two days haven't been so restful as we had some friends visiting. Which probably explains why my throat is so bad this morning. Still we've said all a long some things are worth the downside, and the last two days are definitely worth it.

shoulder

Turns out the shoulder/arm pain is probably a trapped nerve. The pain has calmed down now, the doctor says to monitor it for the next few months and if it gets bad again we shall think about physiotherapy. There is no news on the house move, we are hoping that contracts will exchange very soon. I am now getting very bored of being stuck at home at not seeing people during the day. I am taking this as a sign that I am getting more better.

pain

I am currently experiencing a lot of pain all down my right arm making typing tricky, amongst other things. I am also having more widespread pain in joints/muscles - the joys of CFS!

wildlife

This weekend we saw a stoat, which ran in front of our car as we were on our way to church. It was the first time I had ever seen a stoat, I had to look it up to know what it was. When we got to church there was a pheasant in the car park. I have seen these before, but it is about 25 years since I have seen one so close up. At youth group in the evening (I help to lead it, I am not in denial about my age which is 358 months and a day for anyone who is interested) I saw a pair of goldfinch. I may have seen these before but don't remember if I have.

blubbing

I seem to be blubbing at everything at the moment. I saw some London Marathon, and couldn't eat my dinner for the tears in my eyes. This week Masterchef and DIY SOS have had me in tears. I saw an acquaintance's baby on Facebook - blubbing again. Am watching a bit of This Morning talking about the royal wedding, tears are coming to my eyes. Don't know what that's all about! In other news, I had the longest sleep I've had in a very long time last night, only two wake ups and only one weird dream. I long for that kind of sleep more regularly.

TV

So lent has ended and so we have switched the TV back on. But we have found that we have enjoyed and benefited from having no TV. We have resolved to only switch the TV on when we want to watch a programme, and then to switch it off instead of flicking through the channels and finding something that can stay on. We have decided to buy a televisual listings guide so that we can make decisions about what we watch. In the past we would turn the TV on to find out what was on. This meant that we would then leave the TV on with something on in the background. I know that not having the tele on all the time helps my health, it is exhausting having constant visual and audio input.

train

This week I have been to my Grandma's funeral. She was the last of my grandparents to make her way to heaven. She died suddenly three weeks ago today, and her funeral was on Tuesday just gone. The husband didn't have time off work, so we made the decision that I would go by myself on the train. When we made the decision I was OK with it, I knew it would be more tiring that being driving but knew it was the only way I'd get there. I booked the tickets, the return ones were sent to me, but the outward journey I had to collect at the station. I was going to Cambridge on the way and being picked up by the elder brother, and then staying at Dad's for a couple of days before heading back from Ipswich to Nottingham, where the husband picked me up. This was the cheapest way of doing it.

A friend kindly picked my up to take me to the station on Tuesday morning. I had packed the night before, was sure I had everything, and so felt OK about it all. Well I felt OK about it when I woke up in the morning, the night before was another matter with many tears and panics. When I arrived at the station I went to the machine to put my card in and get my ticket. However all did not go to plan. I forgot the booking code, and needed it to collect the tickets. I asked a member of the station staff what to do and they told me queue at the ticket windows and collect them there. There was a large queue here and I was starting to panic. I had to do some very slow in through the nose out through the mouth breaths. Fortunately some people left the queue, and there was a large group of young people who went to the window together, so it decreased my waiting time. I explained to the man at the window what had happened, he did look at me as if to say 'what do you want me to do about it', but eventually gave me my tickets. I made my way to the platform still trying to stop myself from panicking. I got the train OK, found my seat and thankfully the person who should've been in the seat next to me wasn't, so I had space.

On arriving in London (where I was to make my connection) I really needed a wee. I got into St Pancras and was leaving from Kings Cross. The two are across the road from each other. However there were a lot of works going on and it wasn't clearly signposted, so I had to think a bit to work out where I was going. I had decided to find where I was going and then find a lavatory. Due to the works the only available facility was quite a walk from where I was. But I needed to go, so set off to find it. I walked past the gentleman's facility, and assumed the ladies would be nearby. How wrong I was. It was as far from the gentleman's as possible. I got there, worked out I had the right money to go and joined the queue. I was about 4 from the front when a man came a long and told us all to go straight through as they had to empty the change machine. S0 I got to wee for free! I made my way back to the platform needed and got on the train. This was a simple and short journey and I was met at the station by brother the elder.

The funeral went well, it was a great tribute to grandma's life. Several people we know from Ipswich had come so we were able to chat to them after rather than having to make conversation with elderly relatives we had no idea who they were or sitting in the corner looking anti-social. The rest of the time in Ipswich was lovely due to the lovely people I got to spend time with. The journey back was OK, apart form having to run for train due to bad traffic getting to the station and an hour wait at Ely.

The best part of the whole thing was being met by the husband at the end of the journey. Never has a hug been so wanted and needed. The worst part of the whole thing is that my symptoms are now worse, interestingly delayed by a day - yesterday I was fine. But I know that careful management will bring me back to my 'norm'.

breakfast

I have never been brilliant at eating breakfast. My stomach just doesn't cry out for food until about 11am. Breakfast used to be a yoghurt and maybe some sultanas, or occasionally toast if I had any bread in (I don't eat bread all that often). But since being poorly I have come to appreciate the need for a good breakfast. I find that when I eat a good breakfast I have more energy throughout the day, I want to snack less and I eat a better lunch because I am not suddenly feeling very hungry and satiating that hunger with naughty food. So now breakfast is muesli, porridge, bran flakes or occasionally home made scotch pancakes (often made with sultanas and oats), or a bacon sandwich. I always make sure there is some kind of fruit (dried or fresh), to start me off on my way to my five a day. And I fell much better for a good breakfast. One of my worst CFS symptoms is nausea, and so often I fell even less like eating in the morning, but I find that eating actually helps the nausea. I need to remember when I am well to keep on having a good breakfast, it has become my most important meal of the day.

worth

Well I told myself to only do it if it's worth it. And this weekends activities were worth it, however this time round my health hasn't suffered from the busyness. Friday night we ended up at some lovely friends for dinner, and then I stayed while Mark went to play football, resulting in a latter then normal night. We thought this would mean a bad Saturday. However I woke up feeling ok. We went swimming, and had a lovely swim. I wanted to stay longer, but I know that that is not a good idea so forced myself out of the pool. After a rest and a shower we went to see some other friends for lunch and the afternoon. These are very lovely friends, time spent in their company is easy and having not seen them for a while we had a lot to catch up on. It was also a lot of fun to spend time with their one year old little girl. Nothing gets the biological clock ticking like time spent with a lovely child! The evening was chilled, and sleep came easily - I even managed to sleep for pretty much the whole night, a wonderful bonus. We had a guest speaker at church so had a great sermon, and a fairly good service all round. A chilled afternoon was followed by dinner with some church folk, and then an evening spent watching An Island Parish. And then I had another really good nights sleep, and woke up feeling good. So a weekend of things that should've tired me but didn't. I wonder if it's wanting to do things, and spending time with I want to and who make it easy to be with that don't tire me out so much.

health

Well I set this thing up to write about my health, but don't seem to write about it all that much! This last month or so has been a bit up and down. The down has mostly been my own fault. I know how to pace myself, I know what things are unhelpful to me and yet sometimes I still do them. On occasion I don't mind doing these things - the thing far outweighs the down. But mostly it doesn't. Last Saturday was one of those days. We found out around lunchtime that my Grandma had died. She was getting on a bit, but it was still unexpected. That evening it was the husbands nana's 75th birthday celebration meal. I had known right from when we first heard about it that I shouldn't go. It would mean eating too late for me (I find that if I don't put energy into my body at regular enough intervals I suffer), and a room full of people I don't know well enough to comfortably chat to, and so chatting becomes more of an effort. I had said I would go because I heard too many times 'it would be lovely if you could come', 'it would be nice if you were there, the rest of the family will be there', etc etc. Following the news at lunchtime I knew it really wouldn't do me any good, but felt the pressure to go. So I went. I had a so-so time. And then for the rest of the week I have suffered. Tuesday I was convinced I was having a major relapse and all the hard work we'd put in recently was for nothing. Fortunately by the end of Friday I realised it was just a self-induced set back. I really need to make sure that anything that gives me a week worth of bad is blooming good. The good and bad need to be balanced, I don't wana go through the bad if I don't get the good too. So doofas, learn in future, only say yes if it's going to be worth it.

year

Thursday was a year since I last worked. It turned out to be a busy day (I had to have a big fry up with the husband, then go to sort out a mortgage and then we had a lovely evening with the Herbert's who are fellow Ipswich exports). So I didn't really have time to think about a year of not working. But there have been (and still are) times when not working makes me feel a bit useless. Like I don't make any real contribution. It is not like not working because you are a mum and your job becomes caring for your children, or when you have retired and you have worked for many years and now have the privilege of not working. I am at a point in my life where I should be working, contributing financially at home, making a difference through my work. I try and view my 'job' at the moment as getting better. When I view it like that it helps a bit. But it does sometimes make me feel like a not=proper human being.

television

Well I was missing television when we first gave it up for lent. But now I don't at all really. The only time I really want to switch it on is when the husband is out for the evening and I've got little energy left. That is when the TV becomes my company. But I am finding other ways to keep myself occupied. The husband says he isn't missing it either, which is a good thing. I am finding that I am drawing nearer to God, learning more from him and hearing him more through the no TV than I am through my lent readings. Not that the readings are doing nothing, but I find it interesting as I thought it would be the other way round. It is also helping my health not having a constant sound and visual background to life. We have decided that at the end of lent we are going to start buying a TV listings guide and use that to pick and chose what TV we watch rather than sticking the TV on to see what is on and end up leaving it on.

I do feel that I should apologise, I am a lousy blogger, I often think of things to write but write nothing. My apologies to you if you check here every so often and find nothing new to read.

moving

Well after about 19 months of the house being on the market it looks like we finally will be moving! Some people came to look around the house at the beginning of last week (they are actually our next door but one neighbours), and they put an offer in on Friday. We have however over recent weeks had a change of plan. For those of you who knew we had been planning to move to Ipswich. But it would seem our plans weren't in line with God's and he wants us here in Derby. I think it is no coincidence that when we had just about decided we were staying we get our first viewer in five months, and they want to buy the house and offer a price that is high enough for us to accept. For those with any knowledge of Derby we are looking to move to Sunnyhill, a decision based on its distance from church and the price of houses around there. We would love to move to Heatherton/Littleover but houses in those areas are way outside our price range. So we are going to look at some houses this week and see what happens! More than anything else I am looking forward to having a garden and enough kitchen cupboard space to put things like plates and bowls and cooking equipment in cupboards. Oh and if I could have a gas hob I would be the closest to heaven I ever have been.

adventure

I went on a little adventure yesterday. There is a craft group at church that has just started. It is one where you turn up with your own craft and sit and natter as you craft. It was on yesterday afternoon, and I went. It meant I had to drive there, I've only driven that distance once since Christmas and that time it wiped me out for a couple of days. I managed that ok. I got a bit nervous about going because I'm not good with new things even though I knew the place I was going to and would probably know the people there. But I done it. I sat and done my crafting and a bit of chatting. And then the husband cycled over after work to drive me home coz we didn't want for me to wear myself out quite that much. It did wear me out a bit, I wasn't much good for all else the rest of the day and I didn't sleep great, but I don't feel as bad as I thought I would today. In fact I've made it to Asda today for a little bit of shopping, so I can't be feeling that bad at all.

We are now at day 8 of lent. I am missing TV more than I though I would. I think during the day, or in evenings when the husband is out I use it as company to stop myself feeling quite as lonely. There are also points in the day where I have become so used to the TV being on that I'm now thinking, well what do I do now? I don't want to increase my activity level too much at once but I need to do something. Maybe it's time to pull that cross stitch I've been working on for years out of the cupboard again.

four

This is day four of lent. So far all is good. The two hardest times to not have TV on are Neighbours at lunchtime, partly coz its Neighbours y'know and partly coz it denoted rest time. Now I have to try mega hard to remember about rest time on my own. I have to rest before I get tired and need it and so just waiting til I fell I need it doesn't work. The other time it's tricky is just after dinner. For probably the first time at home we have eaten dinner at the table for four days in a row. And then afterwards for an hour or so it's a bit like, oh so what do we do now. The evening doesn't seem to bring this around so much, just that hour or so after dinner. The lent book is well good mate. For a while now my Bible reading has just been reading a bit of the Bible and I am liking the combination of reading Bible, some thought on it and something to think about. I used to have some material that did this and I have missed it. Oh and (although for some reason it makes me slightly nervous to say this, not sure why) we are already hearing God on something that we had been chatting with him about for a while. And before I forget, one last thing, we have seen an improvement in my CFS symptoms this week. Wonder if it is all somehow connected......

lent

I have been pondering for a little while whether to do anything for lent this year. I decided that I if I did anything I wanted it to be something that helps me to focus on God and draw nearer to him. I was undecided at this point if it meant taking something up of giving something up. So when the husband and I were last in town we went into Wesley Owen. They had a little range of lent resources. Some were for groups with like five studies in them. Some were more deep then this little brain of mine could cope with. But there was one that takes you through the gospel of Luke, with a little reflection and bit for you think/pray about. So I got that one and was satisfied that I had what I needed for lent, I was going to take up reading this book every day through lent (as well as keeping up with the Bible in a year).

There was however something nagging at me that this wasn't quite all. And yesterday I realised what it was. Default setting in our house has become to have the TV on. It didn't matter whether or not there was something on you wanted to watch, it became the wallpaper to our lives. A while back after watching a programme about some people experiencing a silent retreat I and the difference to their lives that silence made, I decided that I was going to have silent mornings. This lasted about a week. Then the TV crept back in, along with the radio. I would have a silent rest, and that was about it. So during lent the TV is not going to be my wallpaper. I am giving up watching programmes as they are broadcast. I am not giving up watching things all together, if I am going to watch something it will be on the iplayer, 4od etc. This is to help me make a concious decision about what I am watching. I will listen to the radio more, and am determined to listen to those CD's that sit on the shelf and never get heard. The husband has decided that he will join me in this. The exception to this is live sport, as you cannot watch this again online. I know that one or two people will think that watching things online and having a live sport exception is a cop out. But my aim is not to cut things out completely, but to think about how I am using my time, to give us more talking time, more time doing things rather than sat with the box as company and hopefully more time with God as it will give us more time and space to pray, read the Bible and listen to music.

I know there are those who don't talk about what they are fasting from, who keep it as a between them and God thing. I however am hoping that talking about it helps me to be more accountable. Feel free to ask any time how its going and what effect its having.

off

I am now completely off the anti-depressants. We decided that I was doing much better, and I never really wanted to be on them but recognised that at the time it was the best thing to do. I am doing ok off them, I have the occasional little wobble but then have to remember that that happens to most people. It's a bit like I am now feeling my own feelings, when I am happy it is a proper happy feeling etc. It's not affected my CFS, which is something I was a bit worried about. It feels good to be off them, I know that we sometimes need medication to help us out and I sure did. But its nice not to need it too.

ouch

I get very tight shoulders and neck. I always have done but since being a poorly girl it has been at its worst. For Christmas I asked for some pennies for a massage to help relieve this and thank you to my lovely sister-in-laws I got the pennies. However it took us a little while to book it. But last night I had said massage. It wasn't a nice gentle relaxing beauty salon type massage, it was a mean sports massage. This is the one where they work on all the knots and tight bits and it hurts. However last nights pain was nothing compared to today. My back feels like its been punched all over. It feels like it is bruised bruised bruised. Whenever I tried to turn over in the night I had to sit up so that my back didn't brush on the mattress. And now sitting down is hurty if I lean back. But you know it is worth it. I can't feel any of the tension, I can move freely, it is lovely.

day

This is a day in the life of doofas. If anybody does read this it won't be so interesting for you, its more for me so that I have a measure of my progress.

get up

watch TV/muck about on computer

breakfast

pilates

rest

shower

sit down

get dressed

wash up

read bible

do puzzler

walk

lunch

rest

watch neighbours

computer time or read

the husband home

chat

walk

make dinner

eat dinner

rest

TV/play game

bed

read

sleep

doctor

Yesterday saw us on another trip to the doctors. When I got married and moved I had to change doctors. I didn't really want to because I don't like doctors much (well going to the doctors, I guess doctors themselves are ok). I had just got used to the doctors I was at, and didn't like the thought of getting used to another one. However I'm really glad I did have to change, because our new doctor is fab. At my old doctors I would go to them, describe what was wrong, and they would diagnose and prescribe as appropriate. But it turned out that all of the things I was going to them with were all symptoms of CFS, but the doctor wasn't putting them all together. As soon as I went to the new doctors and he saw from the old ones all the things I had seen the doctor about recently he put it all together and diagnosed CFS. This meant that I could then access the CFS service in Derby, which has helped no end. He is also clued up about CFS and when I go and see him he knows if things I am going with are CFS related, or something else. However when we went to see him yesterday he upset me. It is probably a silly to get upset up, but he gave me a sick note for 6 weeks, not for 12 weeks as per usual. Now I think he did this because he can see that I am slowly getting better, and wanted to be able to reassess in six weeks time. However it upset me. I think it was because it felt like he thought I should be finding work. He has always been the person that has understood, that has known that not working is the best thing to do for me to re-cooperate. At no point did he say I should be working, just that he would write the note for 6 weeks, but it really got me down. I do want to be working, I truly do, but more than that I want to be well. And I don't want to work at the expense of my health. I also have no idea what work I could go into. I have no job to make a phased return into, and I can't just jump in the deep, I need it to be phased. Without the sick note I can't claim benefits. This is the only form of income I bring in. I know I don't work for it, but I can claim it because I did work and pay my taxes/NI. And so if I don't get it I bring no income in to the house. It kind of makes me feel like I am a bit useless. The husband doesn't mind this at all. He is much better at trusting God than I am, and trusting that he will provide for us. I need to learn from him. I have rambled a bit here, it probably makes no sense. But I needed to write and share.

hospital

I have had a couple of trips to the hospital during January. They were for an x-ray and an ultrasound. The doctor sent me for these because recently I have had an increased need to go for a wee. It was thought kidney stones could be the cause, hence the trips to the hospital. I saw my doctor on Friday for the results. turns out everything is clear, it is not kidney stones. I was a little bit disappointed about this - not because I want kidney stones but because it would give us an answer. The answer I got instead is that it is probably all just part of the CFS. The CFS is causing the nerve endings in my bladder to get a bit muddled and send full bladder messages to my brain when it is not full. Despite the dip I had in January I was thinking we were getting somewhere with beating this CFS, but having this new symptom makes me a bit cross coz it's not just hanging around its giving new challenges. I don't feel an overall down about it, I am still managing to be fairly positive overall. I just wish the CFS would get lost now!

positive

Today I am feeling a bit more positive than I sometimes do. There are some people that help me to feel positive. They are mostly the husband, the Blake-Lobbs, brother the younger and my cousins children. However today's good feelings came from none of them. I found them from somewhere within. It feels good.

journey

I have always been a bit fascinated by the differing journeys that life brings. How sometimes the journey is more exciting than the end, the preparation for a journey, the diversions you sometimes take. 367 days ago I started a new journey. The journey of a wife. There was a lot of preparation for this journey. I had been preparing for it long before I met the husband. Not preparation for the wedding day, but for being married. I was aware that if I ever wanted to get married I had to start thinking about the kind of wife I wanted to be, and work on becoming that person many years ago. Part of this came from observing other marriages, of knowing that the person I was before marriage would be the person I was in marriage and that my husband would deserve for that to be the best person I could be. There were also physical preparations for the journey. We had to prepare a home, prepare the wedding. These were mostly fun preparations. We also did marriage prep classes. We got to share the preparations with others. So now we are 367 days into the journey. A journey we chose to make. It has so far been a great journey of mutual love, support and tolerance. We are both constantly learning what it is to share in this journey, and my guess is that this learning will continue in some form for the rest of our lives. It is a journey with no destination, a journey to enjoy.

The other major journey I have been travelling recently has been that of illness. The preparation for this one was non existent. I never gave any thought before I was ill to what I would be like when I was ill, trying to hone my character to be the best ill person I could be. I didn't make any physical preparations. I had no sessions to help me learn how to be ill. I didn't prepare a place to be ill. I didn't talk to others about being ill. I didn't get ready for a special day on which to start being ill. It is a journey that came to me when I didn't expect it, that decided to take me along on it. And it has definitely been a harder journey than the one previously mentioned. People are happy to talk about relationships, about being married, about learning to live with one another, about getting through tougher times and celebrating great times. Many people have experienced this. People are less likely to talk about being ill. About coping with result this has on your mental health. Less people want to talk about what it is like to have days when leaving the house is the last thing you want to do, and sometimes physically can't do. Less people want to actively share this journey. They will say they are thinking of you, but don't come and sit with you, write to you, join you on the journey. I am thankful for the pocket of people who do. They brighten the journey. I am hoping that the journey of illness is one that will have an end. And if it does then I can certainly say that the destination will be better than the journey.

wedding

This weekend was spent in Kent. We were there for my brothers wedding. It was also our wedding anniversary. It was a bit of a strange weekend really. We got there Friday lunch time and had a little picnic in our room. We were in the honeymoon suite so we had lots of comfy chairs and sofas. This meant that everyone hung out in our room during the weekend. It was lovely to have a place that everyone could be together. Other than that the room was a little odd. It had an ensuite that had obviously been just stuck in the corner of the room. It had a door with rather unfrosted glass. This meant that when everyone was hanging out in the room we couldn't use the bathroom. The bed was highly sprung so every slight move from the other person in it gave you sea sickness. And the walls were covered in dark cupboards and drawers. We did enjoy looking at the naked statues in the garden. It was lovely to see some wonderful Ipswich friends at the wedding, and enjoy having lots of time to chat and play with them. I am now unsurprisingly crashed.

fresh

Yesterday we change the bed. We are a bit scuzzy and don't do this as often as we probably should. I also changed my pyjama's so they were nice and clean. It made getting into bed feel very fresh.

park

Yesterday was a super good day. I had some little bits where I felt a bit droopy, but other than that we had some good fun. I went for a swim, I just love being in the water, I always feel much better when I am. I made a gingerbread cake. I don't think I have made this one before, it is tasty. I made lunch for the husband and myself, and made lots of cups of tea throughout the day. We went to a park I hadn't been to before. It has a nice big pond we walked round, and saw a komorant. They have like an outdoor gym which was fun to play on. And we got to have a nice walk. I even drove there! We saw Hustle, and some other telly. We made pizza for tea, which was very tasty. I think there more things we did too but it was so bust I can't remember. And the best bit is I'm not suffering for it today.

cheers

Cheers for all of the support and niceness after that last little blog. So far the coming off of the anti-d's is going ok, although we are only just through the first week. Unfortunately the nasty dreams have returned. The worst one was yesterday morning. I had had a lovely nights sleep, only woken up once and had slept fairly deep which I don't often. And then the bad one struck. I'm not going to describe because I am trying to forget it and not relive it. But I woke up in tears and nearly hyper-ventilating. The husband leaves early for work so he had already gone, I was home alone. I did ring him up and fortunately he wasn't busy so he could calm me down, and made sure I'd gone downstairs so I couldn't go back to sleep (I often re-enter dreams when I wake and go back to sleep). I thought that it would shake me all day, but strangely it didn't. I did more yesterday than I often would manage, didn't need extra rests and didn't have to go to bed early. I guess the good nights sleep must have counteracted the rest. Had another one last night, not so bad and while the husband was still around, so I was able to wake him and hug through it. I've always had the occasional bad dream, but they seem to come round more often and be worse now. Not sure why.

changes

I've been to see the doctor today, and we have decided that as I have been so good of late I am going to come off the anti-depressants. I have to come off them gradually as you can't suddenly stop taking anti-depressants, your body just wouldn't like it. The doctor has given me a plan for coming off them, and if it seems at any time that I'm not coping coming off them then I go and see the doc again and we readjust the plan. I'm happy to be coming off them, I want to know what life is like without anything other than me controlling my body. I hope that I manage ok without them, it would be a sign that the depression is gone and therefore I am on the overall road to recovery.