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.