Well I've taken it extra easy today; in fact i've done nothing but mess around on the internet and rest on the sofa. I did put a little shoppin away in the cupboards, when it arrived via home delivery. And i did pop next door to return a couple of books. Our neighbours' daughter has Lupus and kindly lent them to me - like me she loves reading -so we are doing a bit of a book swap.
At the moment i am in bed watching Jo Brand Live at the Apollo (i do love her!) And it's Halloween too, and i am planning not to answer the door to any trick or treaters - i have no money to give them nor cakes -so ill pretend to be out! What a misery i am!
I have to say that the late evening is probably my favourite part of the day - because i can legitimately lie in bed comfy and cosy and watching whatever i like on tv, without feeling like i should be persuading myself to be doing something. As anyone with CFS will know, most of the time it just feels natural to lie down or at least sit down, all day every day. Well, i suppose thats not quite true. When i have a bit of energy i get really excited and get out of the damn house asap, or at least do something different!
But i love my room. I love sitting in bed with my lamp on in a dim light - think i shouldve been an owl, or as its Halloween, a bat! Actually i have always been a night owl, even before i got ill. I loved my evenings out and was always inclined to go to bed late. Late evening has always been my 'unwinding' time, which i suppose it is for most people. I have always hated early mornings.
I had to take it easy today - yesterday was a difficult one, energy wise. I went to visit my Grandad in hospital, bless him. I love my Grandad, i am so sad that he is so ill.
Well i can feel my eyes glazing over now so i will sign off. This weekend i am planning to bake again, so i can send him some home made cakes and biccies. So hoping for a good day tomorrow, after being a a little tired today. Goodnight!
Saturday 31 October 2009
Monday 26 October 2009
A nice change of scene...
Well here i am at my boyfriend's flat - decided to travel back with him after he came to visit me at the weekend. I love to come back here. I love spending time with him and having our own space. He is currently at work, so when i do docme back here i like to try and make myself useful around the place by doing some light housework. Of course, it is only 'light'! Usually its pot washing and if im up to it, a bit of ironing. I can only iron 2 shirts at a time though, then i have to sit down. The rest of the day i spend on the internet or relaxing watching TV. I am one of these people that can watch the smae DVD over and over - its embarrassing how many times i watch the same things! I suppose watching anything new spends too much energy, so i like to stick to my well loved comedies - Open All Hours, Benidorm, etc! But spending the day on my own theres noone to say: 'Surely you're not wtaching that again?!'
I go home Tuesday, unfortunately. My plans for the rest of the week are to ry and visit my Grandfther again and to bake some cookies for him. We'll see...
I go home Tuesday, unfortunately. My plans for the rest of the week are to ry and visit my Grandfther again and to bake some cookies for him. We'll see...
Friday 23 October 2009
Another attempt to fully update this blog...
I dont know what's worng with me... i used to love writing! But i cannot seem to get organised to post every day. Probably just as well, i would bore everyone! But i have just looked back and seen how woefully incomplete the blog is! Its time to correct this now...
So, i started in my last post to tell you about my beautiful dog and the fantastic effect she has had on my life. I think maybe she is the key to making me use a different part of my brain; the part that doesnt focus on symptoms and suffering. She gives me something to live for; which was desperately needed. Every day i have to make sure i feed her, let her out and if i feel good enough, take her for a 25 metre walk (and no further) up my road, for a sniff on the grass. Fortunately my family take her for proper walks. But all these little things have got me used to getting up out of my chair and having some tasks to aim for. And if i am just sitting here on the sofa, at least with the dog curled up on my lap, i am pleasing somebody!
I start my M.E. rehab on 24th November. This is an 8 week course run by my local hospital and includes such things as how to do pacing, coping with stress, pain, how to communicate with others to avoid being forced into doing things that are beyond our energy levels, etc. I already have the manual that accompanies the course, so i have most of the info already. I am excited and a little nervous about meeting other epople with M.E. So far i havent met any curent sufferers, even though i do know 3 people who have had it in the past. But current sufferers seem to have evaded me so far - in person i mean! Not sure how i will react. Will they be worsely affected than me? Will they be better? Will i be discouraged by those who have worse symptoms; thinking that i might end up the same way? Or will i feel worse if everyone else has more energy? Probably. But its worth a try.
At the moment i am doing some recommended stretchine exercises each day (although the past week i havent managed to do them, on top of everything else :( )
Another thing i am dreading is the 'payback' after the rehab sessions. They are 2 1/2 hours duration - how to concentrate for that long? Plus i have to be up early. So i dont know how ill be with that. Added to that my poor Grandfather lies ill in hospital with terminal cancer. I have to visit him as regularly as i am able, because i want to make the most of the time he is with us. I am worried that i wont be able to recover from my weekly rehab sessions in time to visit him each week also. But i have to; i cant waste the time we have. But it is going to be hard i think.
Sometimes i feel like i am immersed in the medical world, with illness all around me. It is rare i go out to do anything pleasurable. I miss countless things. I mss life as i knew it really. My life has changed beyond all recognition. I havent been shopping or out with friends properly for a year and a half. I havent been on a day out or had general freedom. Neother have a i been ice skating, which i loved, and of course, i dont work. So i miss lots of things. It's a strugle to carry on sometimes, when i look at life this way. I do try not to. And i have replaced a few of these things with other activities; i guess i have adapted. My latest attempts to occupy myself is through cooking and baking. My anti candida diet has meant i have had to prepare lots of meals from scratch - gone are the mocrowave dinners! So this has helped me to increase activity and pace myself automatically. Ive now started baking, so i can take little baked treats to my Grandad to cheer him up. It gives me a sense of purpose too.
A weird thing today - i have a rash appeared on my upper arm and waist - lota of tiny red, itchy spots! I am a little worred about it, but i will wait and see if it disappears...
Hoping for a better day today - yesterday was not good as i was recovering from the hospital visit. Why do car parks have to be so far away from the wards?? maybe ill do some baking today...
So, i started in my last post to tell you about my beautiful dog and the fantastic effect she has had on my life. I think maybe she is the key to making me use a different part of my brain; the part that doesnt focus on symptoms and suffering. She gives me something to live for; which was desperately needed. Every day i have to make sure i feed her, let her out and if i feel good enough, take her for a 25 metre walk (and no further) up my road, for a sniff on the grass. Fortunately my family take her for proper walks. But all these little things have got me used to getting up out of my chair and having some tasks to aim for. And if i am just sitting here on the sofa, at least with the dog curled up on my lap, i am pleasing somebody!
I start my M.E. rehab on 24th November. This is an 8 week course run by my local hospital and includes such things as how to do pacing, coping with stress, pain, how to communicate with others to avoid being forced into doing things that are beyond our energy levels, etc. I already have the manual that accompanies the course, so i have most of the info already. I am excited and a little nervous about meeting other epople with M.E. So far i havent met any curent sufferers, even though i do know 3 people who have had it in the past. But current sufferers seem to have evaded me so far - in person i mean! Not sure how i will react. Will they be worsely affected than me? Will they be better? Will i be discouraged by those who have worse symptoms; thinking that i might end up the same way? Or will i feel worse if everyone else has more energy? Probably. But its worth a try.
At the moment i am doing some recommended stretchine exercises each day (although the past week i havent managed to do them, on top of everything else :( )
Another thing i am dreading is the 'payback' after the rehab sessions. They are 2 1/2 hours duration - how to concentrate for that long? Plus i have to be up early. So i dont know how ill be with that. Added to that my poor Grandfather lies ill in hospital with terminal cancer. I have to visit him as regularly as i am able, because i want to make the most of the time he is with us. I am worried that i wont be able to recover from my weekly rehab sessions in time to visit him each week also. But i have to; i cant waste the time we have. But it is going to be hard i think.
Sometimes i feel like i am immersed in the medical world, with illness all around me. It is rare i go out to do anything pleasurable. I miss countless things. I mss life as i knew it really. My life has changed beyond all recognition. I havent been shopping or out with friends properly for a year and a half. I havent been on a day out or had general freedom. Neother have a i been ice skating, which i loved, and of course, i dont work. So i miss lots of things. It's a strugle to carry on sometimes, when i look at life this way. I do try not to. And i have replaced a few of these things with other activities; i guess i have adapted. My latest attempts to occupy myself is through cooking and baking. My anti candida diet has meant i have had to prepare lots of meals from scratch - gone are the mocrowave dinners! So this has helped me to increase activity and pace myself automatically. Ive now started baking, so i can take little baked treats to my Grandad to cheer him up. It gives me a sense of purpose too.
A weird thing today - i have a rash appeared on my upper arm and waist - lota of tiny red, itchy spots! I am a little worred about it, but i will wait and see if it disappears...
Hoping for a better day today - yesterday was not good as i was recovering from the hospital visit. Why do car parks have to be so far away from the wards?? maybe ill do some baking today...
Friday 16 October 2009
A long overdue post
Well its been too long since i posted on my blog - i have let myself down again! Maybe i havent posted because i have been feeling more positive and less likely to ruminate. Thats what people tell me 'You never hear about recovery stories on the web because those who have recovered are out in the world.' Lets hope theres some hope then! Anyway, i have not recovered; not by a long shot, but, i have had some form of an absolution; in the form of my lovely new Cocker Spaniel, Dotty. She has clearly been the best medicine i have had so far. Along with Creatine and D Ribose powders (for muscle building)! She has, i think, helped me to relax and feel happier, which has facilitated some healing. Obviously there is still one hell of a long way to go - we know all to well that being happy isnt enough to get us out of the woods -but at least it helps. The recovery times after activity are getting a little shorter, thankfully, although my activity is still minimal compared to a 'normal' person. But small things to a non CFS-er are huge achievements for me.
I thought i would take this opportunity to share some of the things that have helped me:
Counselling - this helped me get my thoughts in order, and although emotionally exhausting at the time, relieved a lot of stress, which aids recovery.
Anti candida diet, along with anti fungals, probiotics and EPA fish oil, St John's Wort, and Co Enzyme Q10. I found a helpful nutritionist at my local herbalist store who actually helped me for free. Might be worth asking at your local herbalist!
After 4 months on the anti candida diet, i started taking D Ribose and Creatine powders and gradually introduce previously forbidden foods into my diet (still working on this)
Meditation CDs- great for relaxing and sending you to sleep.
Half hour rest periods, taken regularly, before i get tired, and following them with light activity, to get going again.
Leaving the TV switched off when not watching it - it was draining me of energy without me even realising!
Hope this helps somebody!
I thought i would take this opportunity to share some of the things that have helped me:
Counselling - this helped me get my thoughts in order, and although emotionally exhausting at the time, relieved a lot of stress, which aids recovery.
Anti candida diet, along with anti fungals, probiotics and EPA fish oil, St John's Wort, and Co Enzyme Q10. I found a helpful nutritionist at my local herbalist store who actually helped me for free. Might be worth asking at your local herbalist!
After 4 months on the anti candida diet, i started taking D Ribose and Creatine powders and gradually introduce previously forbidden foods into my diet (still working on this)
Meditation CDs- great for relaxing and sending you to sleep.
Half hour rest periods, taken regularly, before i get tired, and following them with light activity, to get going again.
Leaving the TV switched off when not watching it - it was draining me of energy without me even realising!
Hope this helps somebody!
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