I've just had the worst three weeks ever.
I don't even have any clue why but there is one thing which may have contributed so I really hope I'm right and that my constant fear of this illness becoming worse is not a reality.
On the 4th July I had an entirely normal day. It was absolutely fantastic - if I'd written down what I did it would have mirrored what many of you write on a day to day basis. I was properly awake at 7 in the morning, got up and instead of taking hours to 'come to' or having to go back to bed, just got on with stuff - which was a good job because the window cleaner picked that morning to do the windows! Nikki had left her jacket at my house at the weekend so asked if she could pop in and get it and when she arrived, asked if I wanted to do something with the girls. I'm always torn when I have a 'normal' day - between trying to catch up with all the stuff which gets way behind when I'm ill or doing something fun and energetic. I was wading through my e-mails at the time (my Inbox was in the fifties!) so I said give me an hour and I'll text you. We ended up going to the 2 small parks near my house then they came back to mine and we had our tea out in the front garden because it was such lovely weather. And I still wasn't tired when they went off so tackled my ironing basket in the evening and got it almost finished.
I can't tell you just how lovely it feels to have a day like that. I checked my diary to see when the last one had been and it was the 18th April! Almost 3 bloody months!
Anyway I was especially pleased because around the middle of June, I had started taking B12 oil which a lot of folk with CFS had found had helped them and so I was wondering if it had actually started to work. Not long after that, I'd read somewhere that it won't work on its own - it needs B1 and B2 or something to complement it so next time I was in ASDA I had a look at their vitamins and found a B complex tablet which seemed to have the required ingredients so bought it and started taking one a day on the 25th June.
After my 'normal' day on the 4th, I woke that night all shivery and achey, unable to get warm but otherwise feeling okay. I pretty much slept the whole day, waking briefly to try and eat some grapes around 2 p.m. Couldn't eat much more later - my appetite appeared to have gone AWOL and I felt nauseous all the time. I just thought I'd picked up a bug somewhere and it would blow over in a few days. I was really disappointed though because I'd just reconnected with an old school friend on Facebook, Sheelagh, and she happened to be in Aberdeen (she stays in my home town Inverness, 100 miles away) - although not in the nicest of circumstances - she was having a tumour removed from one of her lungs. I'd promised to visit her in hospital so hoped I'd be well enough while she was still here.
But as the days passed I got worse and worse. My temperature seemed to be all over the place and I felt really really sick all the time - I was literally forcing food down me, knowing I had to eat - food I was slowly running out of. Nikki ran to TESCO and did a food shop for me - I was completely craving fresh orange juice for some reason and oh man - that first swallow! Like manna from heaven! While she was out I managed to find a card for Sheelagh so got her to post that as well so that at least she would know why if I didn't make it up to see her.
I can't convey in words just how miserable I was. Just the feeling sick all the time was enough and being stuck either on the bed or in the bed constantly with hardly enough oomph to read Prosebox or anything else. And just to add to the fun, I ate a tub of ASDA's fruity cous cous one night and after eating it, realised there was something iffy about it. Nikki had got it for me in the ASDA half an hour away from the house - then had driven over to mine where we had then gone to 2 local parks with the girls (this was on the 'normal' day). It was a pretty warm day and I realised we'd forgotten to take the cous cous out of the boot so it had been sitting there for around 2 hours before it made it into the fridge! That just made everything worse and in the end, I made myself take 2 laxatives just to clear out whatever was in there and maybe get some relief. That helped a little but I could tell there was still something completely upsetting my digestive system and making me ill.
On Monday the 10th, Ian, my brother, was over seeing his kids and said he would pop in to see me around 12 noon so I dragged myself out of bed in the morning, desperately trying to be well enough to get dressed for him at least. I just couldn't manage it though but while I was at the computer, I went on the CFS forum to get some moral support and the first post my eyes lit on was titled 'B12'. Suddenly a light bulb went on! When did I start taking that B complex tablet? Frantic rummaging through my diary. 25th June. So about 10 days after that was when it all went pear shaped. Could that be what was wrong? I immediately stopped taking it and the oil from that point on. And Ian had a lucky escape because I was at a really low ebb that morning and knew I would break down when I saw him but realising there might be an actual cause gave me hope so only a few tears escaped when he came up to the bedroom and gave me a hug!
And he gave me the first proper laugh of the week. It's true what they say - it really IS the best medicine. When I had been checking my e-mail that morning I saw several from him to Lorna, Mike and I, apologising for sending e-mails which had been meant to go to our cousins. Ian and his phone is a standing joke in our family - he's always getting mixed up and sending enormous thumbs up emoticons on Facebook without having any clue as to how they got there! And as I was reading them I couldn't laugh. I knew they were funny and under other circumstances I'd have chuckled but I just couldn't engage with anything properly because I felt so crappy.
Before he came over to see me he asked if he could get anything for me and I asked if he would go to TESCO and get a few of their Sub rolls - I often buy 4 of them at a time and that does me for easy lunches for a few days. Then while I was in the loo I realised I was out of bleach so texted to say if he was still there could he get me a bottle of that as well? I was expecting a phone call because I knew he'd get all confused with the rolls and wouldn't have a clue what bleach to buy so it was no surprise when his name lit up on my phone shortly after.
"Hiya".
"Hiya."
"Have you thought of something else?" says he.
"No - just the bleach - did you get the text about that?"
"Yeah I got that okay. And think I got the right rolls you wanted."
"No worries. As long as it's something edible that'll do me!"
"Ok."
Pause.
(Ian) "So you okay?"
"Uh-huh. What did you phone me for?" Another pause.
"What?"
Light dawns.
"You do realise you phoned me?"
"Oh did I?"
And for the first time in a week I laughed out loud.
And that was a good sound let me tell you.
I really enjoyed our chat and benefitted enormously from it - he cheered me up enough to be able to get up, have a shower, get dressed and change the bed which was badly needing it. The hug, the chat, the feeling someone really cares about you - it does a lot of stuff medicine can't do. But unfortunately you can't bottle people and I was soon back in misery again staring at the bedroom walls, desperately trying to find something - anything - which would distract from that awful sick, really ill feeling. I have to admit I was really scared when on Sunday I really wasn't sure I was capable of getting downstairs to feed the cats and clean out their litter tray. Panic began to set in at the thought that if the basics were becoming too much where was that going to lead? Nikki again went to Tesco for me so at least I'd have supplies for a few days more but the mornings were becoming unbearable and I kept waking up in a panic at the thought of having to get up and do the whole feeding and cleaning out thing. What the hell was this all about?
Food was becoming a real problem. I absolutely dreaded the hours passing knowing I'd have to try and force something down eventually and in the end I just couldn't even try. I was really at the end of my tether with it all so on Monday morning I decided to try taking some Valium in the hope it would calm me down. But even 6 mgs didn't seem to be making much of a difference apart from making me drowsy so I tried another 2 mgs. That eventually made me fall into a relaxed doze and when I woke I suddenly realised that although the sick feeling hadn't completely gone, it was very much more bearable and I actually felt like getting up and attempting a shower. Not only did I have a shower but I was able to get dressed, take my diary out to the garden and as it was a lovely day of warm sunshine, sit out there until after 8 p.m. when the sun disappeared behind the houses.
Sooooo nice to feel the cool breeze on my face after the stale air in my bedroom.
A chicken salad sandwich brought back some of the nausea but I was still able to write for a while then after I came in, I got the hoover out and hoovered downstairs then washed the floors. That felt so good I can't tell you - I feel if I can still do basic housework then things might not be slipping so completely out of control. And around 9.30 - with some trepidation - I tackled a prawn salad and suddenly realised I didn't automatically feel sick afterwards! I was able to sit and enjoy some stuff on Netflix and even do some crosswords at the same time.
The following morning - again the panic - not quite as much though and I thought I might be able to push through it but the writing group was meeting that night and I really wanted to try and go although realised it may have been a tad ambitious given that it was an hour's drive there and back - and I hadn't written anything on the topic! So I had another 6 mgs of Valium hoping it would work the same magic as yesterday - and ended up falling asleep at 4.30 and not waking up until 20 past 8! Oh well - mission aborted. On Wednesday I was back to feeling crap, sick and ill again and on Thursday I was even worse. And I just lost it. Completely. I had absolutely no resilience to keep going any longer feeling so bad.
I would love to say it helped but it didn't - just made me choked up and hardly able to breathe which added to the misery but I was finally able to fall into a doze which at least gave me a little bit of relief for an hour (I'd taken Diazepam that morning as well). And when I woke up I felt slightly better - enough to force myself to get up and get dressed and decide to attempt going to TESCO. It had been 3 weeks since I'd driven the car and I had an appointment in the town on Friday lunchtime so I was starting to get stressed about that as well. I made it though - got there, got a few basic supplies and popped them home then decided to attempt a trip out to Nikki's (half an hour's drive there and back).
That was apparently a bridge too far though and I had to turn back three-quarters of the way there which was a shame but I was cheered on by the fact I'd managed to do a bit of driving and shopping. It's just ridiculous that even these simple things had become such huge obstacles. I think I might be coming out the other side of it now though. Yesterday was a good day. Although I had to cancel my appointment, I was finally able to make it out to Nikki's around 4 p.m. and stay for over 3 hours - and also go with her to pick up a THIRD addition to the family (see pic below for Additions One and Two). This entry has gone on long enough though so I'll talk about that in a different entry - I just want to try out a couple of photos to make sure Imgur's working for me.
These are the first 2 cute furry additions to the Clark household - Poppy and Daisy. They are tiny little balls of fluff and we're having such a hard time not picking them up to cuddle them (that's a bit scary for them as yet). They seem to have settled in really well for only having been there a few days - and last night she added another cat who was with them at the Cats Protection place and who bonded really well with them even though they weren't her kittens. More about that later.
And this is what Lilah - up late with suspected tonsillitis - and looking very 'ill' here(!!) -
thought of Big Brother which Nikki was watching when she appeared through to the sitting room with her 'blankie' (soft blanket she's inseparable from) and 'Hoppy' (bunny to which her dummy is attached).
Wise girl!
I don't even have any clue why but there is one thing which may have contributed so I really hope I'm right and that my constant fear of this illness becoming worse is not a reality.
On the 4th July I had an entirely normal day. It was absolutely fantastic - if I'd written down what I did it would have mirrored what many of you write on a day to day basis. I was properly awake at 7 in the morning, got up and instead of taking hours to 'come to' or having to go back to bed, just got on with stuff - which was a good job because the window cleaner picked that morning to do the windows! Nikki had left her jacket at my house at the weekend so asked if she could pop in and get it and when she arrived, asked if I wanted to do something with the girls. I'm always torn when I have a 'normal' day - between trying to catch up with all the stuff which gets way behind when I'm ill or doing something fun and energetic. I was wading through my e-mails at the time (my Inbox was in the fifties!) so I said give me an hour and I'll text you. We ended up going to the 2 small parks near my house then they came back to mine and we had our tea out in the front garden because it was such lovely weather. And I still wasn't tired when they went off so tackled my ironing basket in the evening and got it almost finished.
I can't tell you just how lovely it feels to have a day like that. I checked my diary to see when the last one had been and it was the 18th April! Almost 3 bloody months!
Anyway I was especially pleased because around the middle of June, I had started taking B12 oil which a lot of folk with CFS had found had helped them and so I was wondering if it had actually started to work. Not long after that, I'd read somewhere that it won't work on its own - it needs B1 and B2 or something to complement it so next time I was in ASDA I had a look at their vitamins and found a B complex tablet which seemed to have the required ingredients so bought it and started taking one a day on the 25th June.
After my 'normal' day on the 4th, I woke that night all shivery and achey, unable to get warm but otherwise feeling okay. I pretty much slept the whole day, waking briefly to try and eat some grapes around 2 p.m. Couldn't eat much more later - my appetite appeared to have gone AWOL and I felt nauseous all the time. I just thought I'd picked up a bug somewhere and it would blow over in a few days. I was really disappointed though because I'd just reconnected with an old school friend on Facebook, Sheelagh, and she happened to be in Aberdeen (she stays in my home town Inverness, 100 miles away) - although not in the nicest of circumstances - she was having a tumour removed from one of her lungs. I'd promised to visit her in hospital so hoped I'd be well enough while she was still here.
But as the days passed I got worse and worse. My temperature seemed to be all over the place and I felt really really sick all the time - I was literally forcing food down me, knowing I had to eat - food I was slowly running out of. Nikki ran to TESCO and did a food shop for me - I was completely craving fresh orange juice for some reason and oh man - that first swallow! Like manna from heaven! While she was out I managed to find a card for Sheelagh so got her to post that as well so that at least she would know why if I didn't make it up to see her.
I can't convey in words just how miserable I was. Just the feeling sick all the time was enough and being stuck either on the bed or in the bed constantly with hardly enough oomph to read Prosebox or anything else. And just to add to the fun, I ate a tub of ASDA's fruity cous cous one night and after eating it, realised there was something iffy about it. Nikki had got it for me in the ASDA half an hour away from the house - then had driven over to mine where we had then gone to 2 local parks with the girls (this was on the 'normal' day). It was a pretty warm day and I realised we'd forgotten to take the cous cous out of the boot so it had been sitting there for around 2 hours before it made it into the fridge! That just made everything worse and in the end, I made myself take 2 laxatives just to clear out whatever was in there and maybe get some relief. That helped a little but I could tell there was still something completely upsetting my digestive system and making me ill.
On Monday the 10th, Ian, my brother, was over seeing his kids and said he would pop in to see me around 12 noon so I dragged myself out of bed in the morning, desperately trying to be well enough to get dressed for him at least. I just couldn't manage it though but while I was at the computer, I went on the CFS forum to get some moral support and the first post my eyes lit on was titled 'B12'. Suddenly a light bulb went on! When did I start taking that B complex tablet? Frantic rummaging through my diary. 25th June. So about 10 days after that was when it all went pear shaped. Could that be what was wrong? I immediately stopped taking it and the oil from that point on. And Ian had a lucky escape because I was at a really low ebb that morning and knew I would break down when I saw him but realising there might be an actual cause gave me hope so only a few tears escaped when he came up to the bedroom and gave me a hug!
And he gave me the first proper laugh of the week. It's true what they say - it really IS the best medicine. When I had been checking my e-mail that morning I saw several from him to Lorna, Mike and I, apologising for sending e-mails which had been meant to go to our cousins. Ian and his phone is a standing joke in our family - he's always getting mixed up and sending enormous thumbs up emoticons on Facebook without having any clue as to how they got there! And as I was reading them I couldn't laugh. I knew they were funny and under other circumstances I'd have chuckled but I just couldn't engage with anything properly because I felt so crappy.
Before he came over to see me he asked if he could get anything for me and I asked if he would go to TESCO and get a few of their Sub rolls - I often buy 4 of them at a time and that does me for easy lunches for a few days. Then while I was in the loo I realised I was out of bleach so texted to say if he was still there could he get me a bottle of that as well? I was expecting a phone call because I knew he'd get all confused with the rolls and wouldn't have a clue what bleach to buy so it was no surprise when his name lit up on my phone shortly after.
"Hiya".
"Hiya."
"Have you thought of something else?" says he.
"No - just the bleach - did you get the text about that?"
"Yeah I got that okay. And think I got the right rolls you wanted."
"No worries. As long as it's something edible that'll do me!"
"Ok."
Pause.
(Ian) "So you okay?"
"Uh-huh. What did you phone me for?" Another pause.
"What?"
Light dawns.
"You do realise you phoned me?"
"Oh did I?"
And for the first time in a week I laughed out loud.
And that was a good sound let me tell you.
I really enjoyed our chat and benefitted enormously from it - he cheered me up enough to be able to get up, have a shower, get dressed and change the bed which was badly needing it. The hug, the chat, the feeling someone really cares about you - it does a lot of stuff medicine can't do. But unfortunately you can't bottle people and I was soon back in misery again staring at the bedroom walls, desperately trying to find something - anything - which would distract from that awful sick, really ill feeling. I have to admit I was really scared when on Sunday I really wasn't sure I was capable of getting downstairs to feed the cats and clean out their litter tray. Panic began to set in at the thought that if the basics were becoming too much where was that going to lead? Nikki again went to Tesco for me so at least I'd have supplies for a few days more but the mornings were becoming unbearable and I kept waking up in a panic at the thought of having to get up and do the whole feeding and cleaning out thing. What the hell was this all about?
Food was becoming a real problem. I absolutely dreaded the hours passing knowing I'd have to try and force something down eventually and in the end I just couldn't even try. I was really at the end of my tether with it all so on Monday morning I decided to try taking some Valium in the hope it would calm me down. But even 6 mgs didn't seem to be making much of a difference apart from making me drowsy so I tried another 2 mgs. That eventually made me fall into a relaxed doze and when I woke I suddenly realised that although the sick feeling hadn't completely gone, it was very much more bearable and I actually felt like getting up and attempting a shower. Not only did I have a shower but I was able to get dressed, take my diary out to the garden and as it was a lovely day of warm sunshine, sit out there until after 8 p.m. when the sun disappeared behind the houses.
Sooooo nice to feel the cool breeze on my face after the stale air in my bedroom.
A chicken salad sandwich brought back some of the nausea but I was still able to write for a while then after I came in, I got the hoover out and hoovered downstairs then washed the floors. That felt so good I can't tell you - I feel if I can still do basic housework then things might not be slipping so completely out of control. And around 9.30 - with some trepidation - I tackled a prawn salad and suddenly realised I didn't automatically feel sick afterwards! I was able to sit and enjoy some stuff on Netflix and even do some crosswords at the same time.
The following morning - again the panic - not quite as much though and I thought I might be able to push through it but the writing group was meeting that night and I really wanted to try and go although realised it may have been a tad ambitious given that it was an hour's drive there and back - and I hadn't written anything on the topic! So I had another 6 mgs of Valium hoping it would work the same magic as yesterday - and ended up falling asleep at 4.30 and not waking up until 20 past 8! Oh well - mission aborted. On Wednesday I was back to feeling crap, sick and ill again and on Thursday I was even worse. And I just lost it. Completely. I had absolutely no resilience to keep going any longer feeling so bad.
I would love to say it helped but it didn't - just made me choked up and hardly able to breathe which added to the misery but I was finally able to fall into a doze which at least gave me a little bit of relief for an hour (I'd taken Diazepam that morning as well). And when I woke up I felt slightly better - enough to force myself to get up and get dressed and decide to attempt going to TESCO. It had been 3 weeks since I'd driven the car and I had an appointment in the town on Friday lunchtime so I was starting to get stressed about that as well. I made it though - got there, got a few basic supplies and popped them home then decided to attempt a trip out to Nikki's (half an hour's drive there and back).
That was apparently a bridge too far though and I had to turn back three-quarters of the way there which was a shame but I was cheered on by the fact I'd managed to do a bit of driving and shopping. It's just ridiculous that even these simple things had become such huge obstacles. I think I might be coming out the other side of it now though. Yesterday was a good day. Although I had to cancel my appointment, I was finally able to make it out to Nikki's around 4 p.m. and stay for over 3 hours - and also go with her to pick up a THIRD addition to the family (see pic below for Additions One and Two). This entry has gone on long enough though so I'll talk about that in a different entry - I just want to try out a couple of photos to make sure Imgur's working for me.
These are the first 2 cute furry additions to the Clark household - Poppy and Daisy. They are tiny little balls of fluff and we're having such a hard time not picking them up to cuddle them (that's a bit scary for them as yet). They seem to have settled in really well for only having been there a few days - and last night she added another cat who was with them at the Cats Protection place and who bonded really well with them even though they weren't her kittens. More about that later.
And this is what Lilah - up late with suspected tonsillitis - and looking very 'ill' here(!!) -
thought of Big Brother which Nikki was watching when she appeared through to the sitting room with her 'blankie' (soft blanket she's inseparable from) and 'Hoppy' (bunny to which her dummy is attached).
Wise girl!
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