oops

I appear to have not blogged for a couple of weeks - oops! It's not because I have crashed, more probably because life has been a bit more busy what with all this Christmas malarkey going on. We had a nice Christmas day with the husbands family, and then with friends on Boxing Day, and on Tuesday we went to see some other friends to play board games. On Monday we hit the sales, and got some mega bargains, and did some of next years Christmas shopping. The husband was on call on Monday, and got a call out just as dinner was ready! It was about 45 minutes away, so he was gone for a couple of hours. No-one has been quite sure about whether he gets paid double for it as it was a bank holiday, the current thinking is that he gets paid normal for a call out, but gets an extra day off. Either way its a bonus for not very much work! Health wise I have been fairly ok, some days by about 5 I feel like I'm done and either pick up again or really am done. It's been nice to have the husband at home for four days running, although has felt a it strange too. I seem to be quite used to my little routine when he is at work, and my love for routine means I find it difficult when that gets broken. Now we are heading into the new year, and are hoping that it brings with it a new wave of good health.

busy

Well this week turned out to be a busy week (well busy for this doofas). On Wednesday we went to deliver some Christmas cards, and went to a Christmas gathering. The card delivering didn't quite go as planned as we ended up staying at the first house longer than planned so just had to put the others through doors. The Christmas gathering was fun, although doing all the chatting and then thinking for playing games was tiring. Then on Thursday I drove to Asda, did the shopping, drove home and unpacked the shopping - all by my very self. I know for most people that this is just a normal thing to do but for me it was very exciting and a very big thing. On Friday I went with the husband to pick up a parcel and went to buy some books from a charity shop. On Saturday we went to go swimming, but the pool was having problems so wasn't open yet, we went shopping instead. We also went carol singing at local shops with our church. It was freezing, it took us a couple of hours afterwards to thaw out properly. This week I have also cleaned the house, a simple job to many but one which I can't do as easily as many. This coming week is going to be a fair bit quieter (apart from the husbands birthday and Christmas).

pub

Last night I had a little jaunt out to the pub. The trip out was to meet up with people from my CFS group. Unfortunately only one other person could make it as the others were busy/too tired. But it was good to catch up with her and here how she is progressing. It made me realise again how important it is to pace myself well, and gave me a renewed gratitude for the group and the medical professionals that gave input to help us understand the illness and how to manage it.

bun

Today I am having a bun disaster. The Husband leads a youth group at church and tomorrow is their Christmas party. One of the things they are doing is decorating buns, so I offered to bake the buns for them. As our oven only cooks on the top shelf I needed to make two batches. The first batch I only put half the amount of egg needed in. This resulted in sunken buns that were biscuit like on top and bun like underneath, but stuck to the case. The second batch had the right ingredients in it. Good start. I put them in the oven and set the timer and checked them when the timer went off. they weren't quite cooked, so I gave them two more minutes. After two minutes they were burnt. Too burnt to use. So I had to make batch 3 and batch 4. Twice the number I needed to make. Thankfully 3 and 4 worked. But it has all left me exhausted. The silver lining though as the husband says is the we get to eat the ruined cakes!

well

Well I thought it had only taken me a week to recover form our London jaunt, turns out it is taking me longer, I just had a couple of better days in the middle of it. I've not helped myself by having a medium busy weekend with my family. We celebrated Christmas as we are not all together over Christmas and went to a panto. It was a really good weekend, but hasn't helped me get back to my norm. On Monday I feel asleep again after the alarm went, then went downstairs and feel asleep on the sofa, and then could just mooch about for the rest of the day. Today I have managed to do a little more, but I am very aware that I am below the norm that I had achieved. Hopefully by pacing myself well I will get back to that norm.

mother

The more I live life the more I realise I am turning into my mother. This is something that people joke about happening, to me it is a reality. And it really doesn't bother me. Although some things I now do that my mum used to do really used to annoy me. One of these was cleaning the house before going on holiday. She used to like coming back to a clean and tidy house. It use to drive us made that she would be cleaning when we used to be leaving, or when other things that we thought were more important should've been happening. But now I love coming back from holiday to a clean and tidy house. And so before I go away, I spend time cleaning and tidying - although I make sure its not done at the last minute. There are other things that I now find myself saying or doing like mum used to. I like it, I like to think that part of her lives on in me. And I hope that I manage illness with just a portion of the grace and dignity that she did, whilst still having those inevitable what's going on I don't like moments that she occasionally had.

week

Well it's taken me a week to get back to my norm after the London trip, and I am pleasantly surprised. It took so much out of me that I thought we would be longer getting back to normal. And I had two nights this week where I went with the Husband while he did some electrical work and both times it took longer than thought so I wasn't in bed til gone ten. I always find that the cold weather is a bit cold making - I don't know if its because it slows the body a bit, or because you are constantly wanting to be tucked up in bed in the warm!

weekend

We have had a fabulous weekend. For our wedding present brother the elder bought us a weekend in London. We had booked to go in May, but I was way too poorly for it to be worth going. When I was starting to get more better we decided to rebook, and we went at the weekend. We went on the London Eye in the dark, it was lovely to see London all lit up. We had booked the cheapest possible tickets to see Grease, and when we got there we were told that the bit where our seats were wasn't available for that show, so they gave us a free upgrade to some really super seats. I think that Grease was the very highlight of the weekend for both of us. We went and saw lots of London sights, visited the National Gallery, the National Portrait Gallery and the Science Museum. We saw the Christmas lights at Regent Street and Oxford Street. We went to Covent Garden, and a German Christmas market on South Bank. We had a truly lovely time. Our hotel was just behind the Eye, so it was really easy for us to pop back for rests whenever needed. I am slightly paying for the busyness now with the fatigue being worse than it has been for a while, but I would rather have had the good time and pay now than missed out on living life.

feelings

Feelings are funny old things. At the weekend I was feeling really good. I was very happy, although we didn't do much I had a lovely time. Monday and Tuesday I felt ok, not as happy as the weekend, but still quite happy. Today I woke up feeling sad and angry. For no particular reason. There are things going on that if I let them could let me get angry. But I didn't think I was letting them get me angry. I know that alongside the CFS I am battling with depression, and this could account for the changes in mood, and the inability to cope with them. I think that as much of the problem of the changing moods is the inability to deal with them. I've never been exactly steady in terms of feeling, but i used to have a better handle on dealing with them. I look forward to the day the ability to cope returns.

shower

Today I am having a bit of a slow day. On slow days I get a bit more brain fog and don't manage to remember much. Tomorrow we are going swimming so today I needed to shave appropriate parts in readiness. I kept on forgetting this, and then remembering again. So I started singing a little song as I got in the shower to help me remember. I went to the tune of Deep and Wide and the words were along the lines of:

Legs and pits,

Legs and pits,

oh I need to shave my legs and pits.

Legs and pits,

Legs and pits,

oh I need to shave my legs and pits.

It worked. I remembered.

grateful

There are many things I am grateful for.

- the wedding of Mr and Mrs Verow, the lovely day it was and the chance it gave to spend time with friends.

- a visit from the younger brother who stayed for three days. I had such a lovely time, and it was wonderful to not be on my own.

- decent sleeps for nearly a week. Half of this was at my fathers in a large bed that made it easier for the husband and I to share. The other half was at home, but I had the bed to myself. Bliss.

- Spending time with the Blake-Lobbs. They are a real blessing to us.

- seeing relatives and sharing food and fireworks time with them.

- the drain man we had to call out in an emergency only charging us for an hour, even though he was here for two.

- tasty bro cooked chilli.

- warm slippers and fleecy blankets.

friends

It is amazing what time spent with friends can do. This last weekend we got to go the wedding of some lovely friends of ours. It was a fantastic day, and the food was mega brill. Being there meant that we got to spend time with other friends as well. It really cheers my soul and ups my energy levels to be able to spend time with people who really care about us, and do their best to make life as nice as possible for us even if life is being a bit tough for them. It's going to be lovely when we can be in Ipswich full time, until then I shall be very grateful for the lovely friends I have.

simmering

Thank you to those of you who contacted me in some way following the last blog. I had had that one simmering away under the surface for a while but it took a while to transfer from head to fingers. I know that those feelings are common for many with CFS, as well as for those with other long term conditions.

I have managed to pick myself up a pretty mean cold, so am having to reduce what I do by even more at the moment, it has really wiped me out. I was saying to the husband, its funny I seem to be coping with this poorliness better than the long term one. In the past if I got a cold I'd be annoyed that it was slowing me down and be fed up by my symptoms. This time I just seem to have accepted it.

feel

If you were to ask me how I am you would probably get the reply 'ok' or 'muddling on through'. Why? Because most people wouldn't listen to the real answer. And writing it here means that anyone can choose to listen or not.

I feel lost. I feel like have no place in anything any more. I can't work, so I can't describe myself according to my profession. I can do little at church, so I barely feel like I belong there. Friends are few and far between in Derby, so I feel like I have no social group to fit into. Because of the CFS I feel like I am barely the wife I should be, I can't even fit into that role properly. I feel lost.

I feel alone. Most days the only person I see or speak to is the husband. I love seeing him and speaking to him, but I love seeing and speaking to other people. I don't even mind if that speaking is in the form of email. But people visit here so rarely that I don't get to see them. We don't get invited out - it's like people think oh no she's ill we can't have them round. I feel alone.

I feel useless. Everyday we (or more often than not the husband) makes a list of tasks for the day. They include things like rests, shower, watch TV. At the end of the day instead of a sense of satisfaction about the things I've crossed off the list I feel pathetic that that is all I can manage in a day. I know I could try and not have a list, but past experience shows that without the list I end up doing little as I need that to focus me. I feel like I contribute little to society, little to my marriage. Like I don't function like a normal human being, and so am useless compared to most people.

I feel sad. I feel sad that this is what my life is now. That I can't do what I used to. That I can't contribute like I used to. That so much of my life is spent in our little house. That I can rarely see much loved friends and family because we don't live in the same town. That I'm not the wife the husband deserves. That having once been so active I now have to be so inactive. I feel sad.

But if you were to ask me, I'm ok, after all you wouldn't know what to do if I stood and gave you that reply so I'll save you the embarrassment.

upped

My level of exercise continues to be regularly upped. I am now managing a 12 minute and a 10 minute walk daily. And on Tuesday when I went swimming I did 12 lengths. These were full lengths as opposed to the half lengths I had been doing. It's good that I can be gradually increasing what I can do, but I do have to continually remind myself not to push myself too far, to make sure they are gradual increases when I'm sure I can sustain the current level.

thankful

There are many things I am grateful for right now.

- foam banana's and yoghurt raisins

- Doctors that listen and want to help

- being able to gradually increase exercise levels

- trips to Ipswich and friends and family there

- a wonderful husband

- a roof over my head and food on my plate

- hot running water

- crafting

- Soul Survivor Bible in One Year

- noticeable improvements in health

unexpected

This weekend I was treated to an unexpected trip to Ipswich. The husband got an email on Wednesday inviting him for an interview on Friday. It was short notice, but he managed to get the time off work, and off we set on Friday morning. We had less than 24 hours there, but it was lovely. I really the notice the difference to how I feel when I am there and when I am here. I can't wait til we get to live there. The travelling has however taken it out of me, along with picking up a sore throat/cold. So I guess the next few days I won't be rushing about quite so much as I recover.

meeting

I went to a meeting last night. I didn't think it would be a long one, but it turned out I didn't get to bed until 10pm. Despite now having a later bedtime, it isn't that late. I slept really well, and wasn't sure how today would pan out, how I would feel. I was really good, until about 4. I managed to get loads done, I had a good walk and even had a little drive. And then about 4 I crashed. I got a really bad headache and my energy levels bottomed out. Fortunately some painkillers, a rest and dinner have picked me up a bit, but I think it'll be an earlier night tonight!

driving

One of the things that I have not been able to do recently as I've found it way too tiring is driving. However since I've started to feel a fair bit better I have started to do a very little bit of driving. This weekend I drove to the supermarket (and the husband drove back). We have decided that most days we will go out for a very little drive to help me be able to drive more by myself. Hopefully the more we build this up the less isolated I will become.

home

Well I am home after a few days at my Dad's. I was there over the weekend with the husband and then stayed on a few days on my own. It was really great to catch up with lots of people, play games and have fun, and I got to help Dad do lots of sorting and clearing out of rubbish. So I had five days when I could see people whenever I wanted and have lots of fun. Now I am back in Derby I feel all lost and lonely. I can't get out to see anyone on my own and people rarely come to see me. So now I am home on my own all day while the husband is at work. I think if I saw more people it would actually help in my recovery, but until I am well enough to drive some more, or until people decide to visit me I am a lonely stuck at home in the day.

exercise

I am trying to do 30 minutes of exercise a day. I know we are all meant to do 30 minutes make you out of breath type exercise five times a week. I couldn't do that without wearing myself into the ground. So I do 20 minutes of pilates and 10 minutes walking a day. Apart from today. Today I am feeling a bit not with it. I had a really strange nights sleep, I didn't sleep best well but when I did sleep I dreamt I was awake in bed. So it feels like I haven't slept at all. Therefore today I am doing less pilates, the same walk and having a much gentler day. We are going away at the weekend and I don't want to exhaust myself too much and end up not enjoying the weekend.

Job

I am currently reading through the Bible in a year, with the Soul Survivor Bible in on year. I am really enjoying it and am finding that I have a better relationship with God through it. Part of yesterday's reading was the first few chapters of Job. He had a really rough time with everything being taken from him. Three of his friends having heard about this went to see him. I love that the first thing they did was sit with him in silence for seven days. They didn't go in and try to change things for him, help make things better. They didn't start off spouting platitudes and there there's and trying to make him feel better. They just sat with him in his pain. How often when we see someone hurting do we try and fix it by doing things or saying nice comforting words? I know that this is quite a normal reaction. Another normal reaction is to ignore the person and the problem, avoid them as much as possible. A very rare reaction is just to go and be with that person. To sit with them in their pain, to be there when needed. The person who is just there for me is definitely the person who has helped me most in this period of illness, not the person who has said nice things or tried to help fix it.

cards

We have nearly finished making our Christmas cards. I simply love being ahead of myself and being prepared, so having these nearly done makes me very happy indeed. I've got a few little finishing touches to add, which will be done tomorrow. Then I just need to find envelopes the right size to fit them (or make some if I can't find them). In the next couple of days a kit that helps me make some fab Christmas decorations should be delivered - I can't wait to get it and start making them! Christmas is nearer than you'd think guys - be prepared!

achieved

Just recently there have been some things I have achieved that I feel help to mark progress on the road to recovery. I am aware that these are things that in more people's worlds are normal and everyday, but for me they are not, and are a step forward.

- I am now walking nine minutes a day. It is a four and half minutes along the road and turn round and four and a half minutes back. Due to the nature of the roads around us there are no round routes to walk round. At first I felt silly walking along turning around and going back. But i Have managed to get over that.

- I am swimming once a week, and managing to do a fair bit of actual swimming. And when I get home I need a rest but I don't feel shattered.

- I drove the car today and yesterday. Today was much more challenging because I was a bit tired from yesterday, so I had to turn off everything apart from the engine coz even the background noise of the air coming through the vents was too much.

- I went to Sainsbury's on my own. This meant I was out of the house on my own. And I had to make decisions about what to buy all by myself. And two of those decisions were lovely new items of clothes for me. And I managed to have some fun chat with the till lady.

- I went to the doctors all by myself. I am rubbish at even going out of the house by myself, let along somewhere that means I have to converse a doctor and listen properly to give him the information he needs to help me get better.

- I got really wiped out last weekend, but through careful management and pacing I have now pulled myself back to the point where I was before the weekend. I was so convinced after last weekend that I had gone so many steps back that it would take me weeks to recover. But it hasn't, and I shall know that in the future.

head

It seems that often the hardest thing to deal with it what goes on in my head. I know that my body is broke at the moment, but it seems that my head is having a great effect on my recovery. The weekend just gone was really draining, and now my body is needing some time to recover. However my head seems to have done a big downward spiral. I am annoyed at myself for putting myself in a position where I do go back a few steps. I thought that I was starting to very slowly get better and then I go and do something that makes me worse. I know that I can now bring myself back to level I was at, I have the tools to do that, but I wish I hadn't put myself in this position. I need to get my head back into a good place to help my body. I need to stop thinking negatively. I need to keep my chin up. I need some good head space. I will learn from this experience.

wiped

We have been away for the weekend. We were staying with some fabulous friends and it was really lovely to see them. However being away from home made it hard to keep to a routine that helps me. Mealtimes were completely different, activities were completely different, rest times were harder to come by. We did a lot of things requiring brain work and little physical activity. I am now completely wiped. It shows me that putting all the things that I learnt at CFS group work and help me no end. Today I am going to be chilling a little more than normal to get over the weekend, and then from Tuesday will properly reinstate normal routine knowing that doing the right things helps me no end.

finished

Well the CFS group I had been going to has finished. The last one was yesterday, and I thought that leaving at the end I would feel sad. But I didn't. I guess I felt kind of uplifted, like the rest of my life starts now and I have the tools to handle it. I know that I have been given all I need to be able to manage my CFS, so long as I put those things into place. I will miss some of the people at the group, it was good being able to talk with people that are going through the same thing. However I think we are going to try and keep in touch with each other, so I will still be able to access that support. I am really grateful to the Chronic Fatigue Service here in Derby, they have helped me understand the condition so well, and given so much to me in terms of knowing how to handle it.

Mourning

I feel like I am slightly in mourning. All of my life September has marked something of a new year. When I was in education it was the start of the new school year. All of my working life any job I have had has involved a September start, I have either been in schools or working with children at church which brings with it a September restart to all groups. So now I am not working September has begun and it brings with it no starts. No groups starting up, no new children to meet, nothing new. Just the same old illness and the same old attempts at managing it. Maybe next September will bring a new start with it. And so I feel I am slightly in mourning as I don't get to experience the normalness of September.

helping

A couple of months ago I took up Pilates. I have a DVD with 10 minutes sections. When I started I did the 10 minutes stretching part. It was a bit hard work to start with, so I wouldn't do all of it, just what I could manage. I found that it meant that I was getting less pain in my joints and muscles. I now occasionally do a bit of the belly on or bums and thighs. I can't manage to all the repetitions of every bit of it, but I am finding it to help me an awful lot. It is a nice gentle type of exercise that I can do while I am unable to do any more vigorous exercise. It is helping me a lot, and strangely giving me some hope for the future that there will be a return to a more normal.

lonely

There are many days when I see no-one apart from the husband. Part of this is because we live too far from friends for me to walk to see them, part of this is because friends don't seem to visit us. This leaves me feeling fairly lonely a lot of the time. It doesn't help that I find talking on the phone to be quite tiring. Some people are good at sending texts and emails and such. These help me feel a little less lonely. I think a little of what doesn't help as well is that I go to bed alone and get up alone, as my bed and waking times are different to the husband. I've found from talking to others at my CFS group that they can feel isolated and lonely as well. It's not a symptom of the condition, but it does seem to be a by-product.

moon

I've had a little break from here because the husband and I have had a little holiday. We had a lovely time being able to catch up with friends and family, and going swimming and to see the sea.

Some friends in life you don't get to see very often. One of those type of friends I was texting to wish them well in a new job they are starting. They asked how I was and I told them taking small steps on the road to health. They replied that small steps can get you to the moon and back. I think getting to the moon might be my new aim. I will see what it is like there before deciding if I come back again or not.

blessings

I am incredibly blessed.

I am blessed to have such a wonderful husband who looks after me so amazingly. He fully understands what I'm going through, and he is there supporting me the whole way. We often use 'we' instead of 'I' because it really does feel like we are in this together. He is committed to making sure that I am well enough to return to work before I even start looking for work, not worrying that we only have enough pennies for the essentials. He is happy to do all things around the house I can't manage, helps me keep my chin up and always looks on the positive. I am blessed.

I am blessed to have an understanding supportive family. I don't get to see them as much as I would like, but I am blessed to have them as my family.

I am blessed to have friends that keep in touch even when I can't see them often or manage much phone chatting. I love getting emails, messages and letters from them. I am grateful to those people that understand that I can't do what I used to, but still take the time to be my friend.

I am blessed to know my loving caring God. My relationship with him has given me more strength than anything else. In those lonely moments I know that I am not alone. When I am feeling weak there is one that gives support and strength. I have a constant rock to stand on. And being able to share that relationship with the husband means so so much to me.

I am blessed to have a roof over my head, a warm place to sleep, food and drink each day and clothes to wear.

I am blessed beyond belief.

tunnel

I constantly have to remind myself that there is light at the end of this tunnel. Some days look bright, others look dull, but there is light at the end of the tunnel. I feel that overall I am starting to get very slightly better. It is a very very slow slightly better. It can be hard for recovery to be so slow. You get used to being ill with a cold or such like, and a few days later being better again. But with CFS any recovery is a long process. I'm glad to have started on the journey, and I know that remaining positive (or at least trying to), is helping a lot.

wave

I've been a bit up and down this week. Not really sure why. I think that sleep affects how I feel and how I cope with being poorly. It's been a bit like being wave, going up and crashing down. I had a pathways to work interview this week. It is because I am (or rather was, and hopefully still will be but will write about that another time) claiming ESA. During this we basically ascertained that I am not well enough to work at the moment, but that when I am well enough I will find some very part time work as I won't be able to jump in with both feet straight away, I will need to gradually ease back in. The lady said that any support I need I can call and make another appointment if needed. Going back to work is still a fair way off though. CFS group this week was about stress and the management thereof, which was quite useful.

forward

I find that one way to help myself to feel better is to look forward. Both to the long term and the short term future. The long term is looking forward to being more better, to hopefully living nearer to friends and family, etc. The short term is exciting things that we get to be a part of. The one that is keeping me going at the moment when I feel rubbish is Gareth and Zoe's wedding. Gareth is my extra brother and has helped me through some really tough parts of life. He is one of my little brothers best friends, and yet we still manage to be friends in our own right. I just know that their wedding is going to be a special special day and I just can't wait for it. Thinking about it is keeping me going when I feel a bit crap, and it is a great incentive to do all I can to be as well as I can by November so I can enjoy it to the full.

ouchy

My head and tummy are being really ouchy at the moment. I'm no really sure why, but I'm finding it a bit hard going. I'm not sure if it's because I've not been resting enough, or resting too much, or doing too little or doing too much. Or if it is just one of those things. While it's being hurty I am trying my hardest not to let it get me down. And so far its working.

up

I feel like I am slightly on the up. I don't know if this is physically, or mentally or both. I is a good feeling, and I'm hoping that its physically and mentally. I know that when I am better in the head, it helps me be better in the body and vice versa. I know that part of this is putting into practice what I'm learning at the CFS group, and part of it is the support of my wonderful husband helping me to keep my chin up. I still have those moments of can't cope, and feel isolated an awful lot of the time, but am pleased that I seem to be managing a very slight up.

filum

We took a trip to the cinema to see that newish filum Toy Story 3. We didn't see it in 3D as our local cinema only had 3D showings at times we couldn't go. We went to a 5:30 showing so that I hopefully wouldn't fall asleep while watching, which meant having an early tea. The filum was really good, highly enjoyable and would recommend it to anyone - even if you haven't seen the first two. I managed not to fall asleep in the cinema, which can be tricky when sat in a comfy chair in the dark! I think this was partly because the filum was really good, and partly because I had done a good job of pacing myself during the day. I made sure that I didn't do too many mental tasks and that I had enough rests.

Smile

I realise that at times what I write here can sound a bit all doom and gloom. And some days really do seem like that. But everyday seems to have something in it that brings a smile. Most of those things are courtesy of the husband. In fact they are not just courtesy of the husband, they ARE normally the husband. I'm not so sure how I would be getting through all of this without him. Somehow he manages to be this tower of strength when I am just a crumbling heap. He helps to lift me up and helps me to keep my ever drooping chin up. There are other occasional things that bring a smile, like a nice email from a friend, or a lovely letter or a little facebook message or text. Those little things that remind me that I'm not in this alone, that friends and family are standing alongside me in these low moments. I like to smile. And I like the people that bring a smile.

Prison

I occasionally feel like I am in some kind of prison, only able to play out when someone comes to release me. I cannot walk far on my own, and I find driving to be so tiring that it is not worth even attempting. And so unless someone comes to let me out and take me somewhere then I am stuck inside these four walls. It doesn't help that our house is very small and so I can't even get much of change of scene when in the house. All of our friends live a twenty minute drive from our house. As I cannot drive at the moment I am reliant on them coming to see me. However people don't seem to do that so often. I don't know if its the distance, or that they think I won't be up to seeing them. I would happily tell them if I was too tired for a visit if they let me know beforehand they were coming. If I know I have something on for a particular day then I will base the rest of my day, the rest and the activity, around whatever it is I am doing. I think I'm feeling a bit more imprisoned than usual as we were at Soul Survivor last week. And I felt free. There were people about whenever I was up to people. There were things that I could access on my own as they were near enough to walk. And now I am back to my four walls. It's making me look forward even more to a little visit to the home town at the end of the month.

Goal

I have been going to a CFS/ME group that is run by my local chronic fatigue service. It is a nine week course and has so far been incredibly useful. They are trying to help us to get back into graded exercise and to set ourselves a goal that we can work towards slowly. My goal is to be able to go swimming once a week for 30 minutes. By swimming I mean actual length swimming not just floating around in the pool. To do this I am going to start by doing a little it of daily walking, and some Pilates stretching four times a week. I know that this is not swimming, but I need to build up a bit of stamina, and improve muscle length/strength. I will also go to the swimming pool once a week just to float about. It is important for me to do this because I get anxious going new places, and going places where there are lots of people. So it is important to be able to get used to going to the swimming pool before I actually start swimming. I will then gradually build up the amount of walking and pilates I do, before starting little bits of real swimming once a week. Hopefully over time I will be able to build up the swimming, until it is 30 minutes once a week.

I feel better knowing that some kind of return to something that is normal is possible. I hope that by doing more exercise it will actually build up my stamina more and will lead to me having more energy. Swimming is something I have always enjoyed - I just love being in the water, and doing something that makes me feel good is also going to increase my feeling of well being and help me feel better.

bulge

My stomach has a definite bulge at the moment, and its not the only part of me that is getting fatter. And so I have decided that I can't just become a blob, I need to do something about it. So I am going to be more careful about what I eat, and attempt to gradually do more exercise. I know that I can't suddenly do more exercise, I need to do it gradually, a sudden increase can increase my symptoms. The past few days the eating thing has happened, but the exercise thing not so much coz of this silly old cold. Thankfully that is starting to go a little bit now. I want to try swimming and some gentle walking, and see where we go from there.

eh?

I don't get it. Last night I slept really badly. The sore throat has become a proper cold and that combined with the husband staying out until 1 in the morning (dirty stop out I know) meant that I didn't really sleep much at all. And yet today I don't feel as bad as I do on days when I've slept ok. I don't really get it, maybe tomorrow I will feel the unbenefit of the no sleep. We celebrated six months of marriage on Friday - and because it was on cheap bought some posh ice cream. I got it out of the freezer today to enjoy a bit more and instead of putting some in a bowl like a good girl, I ate it straight out of the pot. What a mistake. Putting it back in the freezer with some in was one of the hardest things I've ever done. And knowing that it is sat in there it is kinda hard to leave it there. Guess it won't be long until that's all gone.

rest

Yesterday at the CFS group we were looking at rest and sleep. I think that I have got the rest thing down ok. Most days I get rests in when I need to, and I seem to do ok at the actual resting, at turning things off (including my brain). But I'm not so good at the sleeping thing. Turns out that people with CFS tend to get a lot of REM sleep, which explains the bizarre dreams I have. But don't get enough of the deep refreshing sleep. I now have some tips on how to have a good bedtime routine and relaxation techniques that should help me to get more deep sleep. This week will be about putting them into practice and hoping they make a difference.

scrape

I woke up today with a sore throat, that may be why I was feeling so rough yesterday. I still feel fairly lousy, but all the rest I got yesterday as I couldn't do much else has helped. We were meant to be going to friends for dinner last night, they had graciously timed it so that I could go. Unfortunately due to feeling so lousy I couldn't go. The Husband had a lovely time and I'm really glad he still went. I'm aware that me being poorly means that his life has changed some what and that he doesn't always get to socialise as much as he might otherwise. Unfortunately the car got scraped as he was at the friends. Hopefully it won't cost too many pennies to get sorted.

bluerggh

Today I feel very rubbish. I think it is the busyness of the weekend catching up with me, along with a medical yesterday an cooking two dinners (due to a drop plate of food). The medical yesterday was to allow me to claim the not working part of job seekers. It involved answering a lot a lot of questions. Thankfully the lady doing the medical had to keep typing things into her computer so I had little pockets of time where I could think about nothing. I know that on bad days I still need to do things, but this is being a hard day to do that.

instant

I've been reflecting a bit on things that were said at the group I went to on Thursday. It seems from what people were saying that really they are looking for an instant fix to this illness. Whilst none of them said this it was apparent through what they were saying that this is what they were after. I think that if you are looking for an instant fix to CFS you are unlikely to recover. It is only by realising that it is a slow process, and one that you have to be involved in that recovery will take place. It is not like just taking some tablets, or rubbing a cream in, you have to be committed to your recovery and take an active part. This realisation is where recovery begins.

group

Our local CFS service run a group that is not a support group but rather come and learn more about how to manage and deal with your CFS group. It runs for nine weeks and I started it this week. I think it is going to be really useful in learning more about CFS and learning more about its management. The group itself is quite an interesting mix of people. Hearing other peoples stories made me realise that we are actually managing quite well, both in terms of pacing, coping and mentally. I left this week feeling reassured that we are managing ok. Next week we are learning about sleep and resting, and each week we get to learn a relaxation technique. I'm looking forward to knowing how to rest and relax a bit better.

viewing

Today I am really tired, have pain in my lower back and down my left leg/foot, headache, shoulder pain, nausea, and go dizzy when I stand up (that's a new one for me). I'm struggling a bit with motivation as well, even motivation to get food which isn't great as the lack of energy doesn't help with the lack of motivation. I didn't think I overdid it yesterday despite a little trip to town, but maybe I did. Today I can't rest totally as we have someone coming to view the house later so there are some bits of tidying and cleaning I need to do. This is actually probably a good thing as I find that doing things is less draining than watching TV, which is probably what I'd do if I was doing nothing.

spoons

So today I feel unusually good. No idea why. I'm finding that writing down everything I do helps to make sure I am pacing myself well, and I've slept well for three nights in a row, I guess that will've contributed to feeling ok.

I came across a link to this on someone else's blog. It's written by someone with Lupus, but goes a long way to explaining what its like living with CFS. http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/

Shopping

I had been given some pennies to spend for my birthday, and we went out to spend some of them yesterday. I have to be careful with the whole shopping thing, it can be hard to make sure I don't over-do it as you want to shop properly and get all your after. We helped to combat this by doing some shopping, going home for lunch and a rest, and then doing some more shopping. This along with a nice sit down while the husband tried some clothes on meant that I didn't over-do it. And I managed to get some lovely clothes! Nice one!

Sleep

I often find it really hard to get a good nights sleep. It can take me ages to fall asleep, and then I wake up several times during the night, quite often finding it hard to go back to sleep. And like others with CFS in the morning I feel very unrefreshed. Last night I was blessed with an amazing nights sleep. I must have settled down about 9ish, went straight to sleep and despite waking up several times I went straight back to sleep each time. It was truly great to have felt that I have actually slept, it makes such a difference.

yesterday

I decided yesterday I was going to have a day off from being ill. Well not a day off from the actual illness, but a day off from thinking about anything to do with it, so I didn't blog, didn't keep my what I've done diary, didn't think about the various symptoms I was experiencing, just didn't think about it. It was refreshing to have a day off.

ownworstenemy

I have the return of the horrendous headache. I don't like it one little bit. But I think it may be here because I am my own worst enemy. You see if I rest regularly, and make sure I don't over do it then my symptoms lessen. But I am rubbish at resting, and not brilliant at making sure I don't do more than I can manage. If only I would learn I would really help myself.

Symptoms

This one is more for me than for anyone else to read. Sometimes I find I have illness that I am not sure if it is CFS related or not, for instance yesterday I had some bad stomach pains. So I am putting here a list of symptoms of CFS so that I can refer back to this when I am not sure if something might be CFS related or not, rather than having to google it each time. The list has been made from several medical websites.

Physical and/or mental fatigue

Unrefreshing sleep

Sleep difficulties

Muscle and joint pain

Headaches

Poor concentration and short term memory

Difficulty organising thoughts and finding words

Nausea

Brain fog

Stomach difficulties not dissimilar to Irritable Bowel Syndrome (eg constipation, diarrhoea, bloating, cramps)

Frequent or recurring sore throat

Tender lymph nodes

Chills and night sweats

Sensitivity or intolerance to light, alcohol, loud noise and certain foods

Mood swings

Flu like symptoms

Palpitations

Dizziness

Sweating

Visible muscle twitching

Psychological problems (depression, irritability, panic attacks, anxiety)

Dizziness

Excess sweating

Balance problems

Difficulty controlling body temperature

Jaw pain

Weight loss or gain

Eye pain or dry eyes

eating

Yesterday I was very good, had lots of rests, didn't over do it. Until the evening. We were out to celebrate multiple birthdays in the family. The table was booked for 6, which is good as I need to eat quite regularly, and can't cope with eating too late at night. However we didn't order our food until nearly 7 o'clock, which meant we were quite late (for me anyway) eating. There were several people there that did insist on chatting a fair bit, something that is also quite tiring. And so today I am quite a tiredy girl. I've not made it to church today, it was too much this morning to get ready in time, and I knew that there would be more people who would insist on chatting! It being Sunday and the husband having no duties at church this week meant that for the first time in a long time I got to wake up to hugs and kisses, always a good way to brighten a dull day!

Ow

Today I am very hurty. I think I might have overdone it yesterday. During the day I was really good. I had a few things to do like the washing up, that I was good and did in two lots instead of trying to do it all in one, and I put the washing out and did a bit of tidying up. I had a bit of computer time and watched a bit of telly, and in between all of that I had lots of lovely rests. And then at half 4 I started cooking dinner as we some friends coming round. I could easily have let the husband take over the dinner cooking when he got in, but I was enjoying it and felt like I was ok to carry on. This morning I realise it I was not ok to carry on, and the pain in my head and body is a reminder that I really should limit my activities, and let other people help me out instead of trying to be so independent.

nausea

I find the constant nausea to be incredibly annoying. CFS seems to come with so many symptoms, some of which I experience and others which I don't. I don't like any of them, but I especially don't like the nausea. Many of my other symptoms seems to wax and wane somewhat, but not the constant nausea. It is yucky.

Pathetic

I have spent a few days at my father's house. It was nice, but I do find it harder to pace myself when I am away from home, and even harder when I am away from the husband.

When away I got to see the very lovely Amy and Rich. They are very super duper people that I wish I could see more of. While we were chatting Amy asked me if I was keeping a diary of what I was doing, how was pacing myself. This is something that the Chronic Fatigue Service have told me to do. But its something that I haven't yet done. Amy asking me got me to thinking why I hadn't done it yet. And I realised that it was because I was worried that doing so would make me feel fairly pathetic. What I can manage to do now is so much less than I used to be able to do when I was well. If I see written down what I have done in a day I run the risk of feeling like a big bag of patheticness as I realise how little I can achieve. However writing down what I am doing will help me to actually pace myself well, as I can look back and see where I was doing too much, when I was not resting enough etc. And by charting what I have done will be a good way to see how I am progressing, to know how and when I am getting a bit better. By not writing it down I am missing out on the benefits from doing so. I think I need to start keeping a diary. I may use this blog to do so, or may just stick to the old paper and pen, we'll see!

why

I started this blog after reading a blog that Keith, who I went to school with, had started. He also has ME and I realised through reading what he was writing that it might help me if I can chart how I feel and what I'm doing. This might mean that reading this is quite dull for most people, but I'm hoping it will help me.

I feel it is partly my own fault that I have CFS. In June 2009 I got Glandular Fever. I had a week off work, and then returned. I was working with children in a variety of schools, and so I didn't return to the schools I just returned to office work and making sure that everything in the schools was covered. I carried on working until the summer holidays, even returning to do some bits and pieces in schools. As the summer holidays arrived I realised that keeping going was doing me no good, so I went to see the doctor, who signed me off. I was off for four weeks, and then off part time for a following six weeks. In all fairness I probably should have been off for longer, but I was the sole employee of the charity I worked for. I knew that if I was not there doing the work, planning assemblies, clubs etc then they wouldn't get done. So I decided to return part time to make sure the work continued. In September I was joined by a full time volunteer student worker. This meant that I felt I had to make even more of an effort to be at work and to be functioning fully. And so I pushed myself to keep going, to make sure that all things at work kept going. Because of this I never became fully well again from the GF, and have ended up now dealing with CFS and depression. You would think that I would have learnt from that, but no it turns out that I am still learning my lesson about resting enough and not pushing myself.

Chin Up

The name of this blog comes from something my husband often says when I'm feeling down or having a bad day. He will hug me, talk me through it, assure me that all will be ok smile and me and then say 'keep your chin up honey'. If most people said that to me I would feel that they are patronising me. When he says it it feels like a huge encouragement, it lets me know that he is with me through it and that things will be better.

I forgot to add when I first posted this, the doofas part is because I have often called myself roofus doofas, or just doofas - normally when I do something silly, such as 'oh you silly doofas' or 'what d'ya do that for roofus doofas.'