It's been a little while since my last post but I've been unwell. One of my previous posts was about having to take more sick days and unfortunately I've continued with the same viral throat infection for over two weeks now. It's very frustrating how much longer illnesses last now.
I did go back to work for 3 days last week but it was tough going, especially given that I had 3 nightmare journeys home, with one particularly bad one taking 2 hours 10 minutes!
Unfortunately being unwell for 2 weeks has meant many sleepless nights, evenings spent in watching the TV rather than seeing friends or going for drinks which has been hard and despite not doing anything, it's been tiring. I've had numerous work colleagues telling me I look pale, unwell, tired and peaky, which is always so nice to hear lol.
Who would think that being tired would make feeling that doing a blog post was too much effort?
Today is the first day I'm feeling more normal, my cough feels less severe and I didn't get woken up with a coughing fit in the middle of the night so I'm feeling much perkier :)
I went to the doctor about my cough and also spoke to her about my post viral fatigue and she's sending me to see a specialist in ME/CFS. Have any of you had any experience with this? I'd appreciate some advance knowledge of what to expect at an appointment and what treatment they might offer. Hopefully this will be a good step forward and will help on the road to recovery. I'm staying positive about it all a I do believe having a positive mental attitude helps you to deal with things thrown your way.
Wish me luck and I'll keep you all updated with how it all progresses.
Sunday 31 August 2014
Thursday 21 August 2014
Charities
Where there's an illness or condition, there's likely a charity and for CFS/ME sufferers there is Action for M.E. As their website states, they are an organisation led by people who suffer from ME, for people with ME.
The website offers a plethora of information on the condition both for sufferers and their friends and family who may be looking for ways to help their loved ones.
There are some fundraising ideas on there - a few are connected to running marathons or other long distances, which I assume are ideas for those supporting sufferers rather than for sufferers themselves. Just the idea of running for the bus is tiring enough, even for me who only has a mild case of PVFS! But there are plenty of fundraising ideas that require much less energy - or 'spoons' which is a term I'm very new to, but it does make a lot of sense!
There's still a lot to learn about CFS/ME so the idea of fundraising to help with research and awareness can only be a good thing. Bake sales are always a brilliant way to raise money - baking can be quite relaxing and everyone loves to eat cake and is willing to spend their hard earned cash on yummy home baked goods.
If you have a relatively mild version and are able to work then why not suggest holding a bake sale and asking others to help and bake their favourites to sell? With all proceeds going to Action for M.E of course. If you're not able to work then perhaps ask family and friends to hold a bake sale in your honour? :)
Prior to getting ill at the beginning of the year, I had a fledgling cake business which I really enjoyed but have since had to take a huge step back on due to much lower energy levels and tiredness. I hope one day to get back up to strength and get back on the cake horse :) so it's no surprise I'd be a big advocate of the bake sale
But there are other options, like a having a raffle or a fancy dress party, or an auction, or a 'night-in' or a dress down day at work (a pyjama/dressing gown day would be ideal for CFS/ME sufferers! lol). If, as a sufferer, you want to be involved in raising money for this charity, then you have to think about what you think you can physically do (think about your spoons), what others can help you to organise or what you can organise others to do for you.
Together, we might just be able to beat this thing
The website offers a plethora of information on the condition both for sufferers and their friends and family who may be looking for ways to help their loved ones.
There are some fundraising ideas on there - a few are connected to running marathons or other long distances, which I assume are ideas for those supporting sufferers rather than for sufferers themselves. Just the idea of running for the bus is tiring enough, even for me who only has a mild case of PVFS! But there are plenty of fundraising ideas that require much less energy - or 'spoons' which is a term I'm very new to, but it does make a lot of sense!
There's still a lot to learn about CFS/ME so the idea of fundraising to help with research and awareness can only be a good thing. Bake sales are always a brilliant way to raise money - baking can be quite relaxing and everyone loves to eat cake and is willing to spend their hard earned cash on yummy home baked goods.
If you have a relatively mild version and are able to work then why not suggest holding a bake sale and asking others to help and bake their favourites to sell? With all proceeds going to Action for M.E of course. If you're not able to work then perhaps ask family and friends to hold a bake sale in your honour? :)
Prior to getting ill at the beginning of the year, I had a fledgling cake business which I really enjoyed but have since had to take a huge step back on due to much lower energy levels and tiredness. I hope one day to get back up to strength and get back on the cake horse :) so it's no surprise I'd be a big advocate of the bake sale
But there are other options, like a having a raffle or a fancy dress party, or an auction, or a 'night-in' or a dress down day at work (a pyjama/dressing gown day would be ideal for CFS/ME sufferers! lol). If, as a sufferer, you want to be involved in raising money for this charity, then you have to think about what you think you can physically do (think about your spoons), what others can help you to organise or what you can organise others to do for you.
Together, we might just be able to beat this thing
Back to work
So I'm back in work today - wish I wasn't, I really don't feel up to it, especially after waking up to have a few coughing fits in the night! But I'm in because I'm on annual leave from this afternoon and if I stayed off sick today then all the days of my annual leave, until I'm back in next Wednesday, would count as sick leave and I just can't have any more sick days on my record! :-(
However I'm wearing my special Superman pin badge and hoping that will get me through the day - and at least it's only half a day so I'll be counting down the hours!
I'm meeting my mum and dad for lunch when I finish which will be a nice relaxing end to the day - and they're even insisting on me driving the car down into the city centre rather than risk potentially walking back up to my workplace (which is 10 minute walk from the city centre) in the rain...if it's raining. they don't want me to get wet and risk extending my illness and they don't want me to get too tired on the walk. My parents are lovely and very caring, if a little over zealous on the protectiveness front at times but it's nice to receive support like this, especially when most people would laugh if I said I was driving into town!
Wish me luck and here's to resting up over the lovely long weekend (which is supposed to be freezing! Brrr...stupid English weather!)
However I'm wearing my special Superman pin badge and hoping that will get me through the day - and at least it's only half a day so I'll be counting down the hours!
I'm meeting my mum and dad for lunch when I finish which will be a nice relaxing end to the day - and they're even insisting on me driving the car down into the city centre rather than risk potentially walking back up to my workplace (which is 10 minute walk from the city centre) in the rain...if it's raining. they don't want me to get wet and risk extending my illness and they don't want me to get too tired on the walk. My parents are lovely and very caring, if a little over zealous on the protectiveness front at times but it's nice to receive support like this, especially when most people would laugh if I said I was driving into town!
Wish me luck and here's to resting up over the lovely long weekend (which is supposed to be freezing! Brrr...stupid English weather!)
Tuesday 19 August 2014
And another sick day
Here I am, sat at home writing this new blog post as I'm too sick and tired to go to work...yet again.
I think I've pushed myself a little too far in the last couple of weeks, mostly by working a six day week, not giving myself much chance to rest.
I developed a sore throat on Friday and it's progressively become more sore, like it's raw all the way down my throat and then the cough started on Sunday. It sounds really chesty, like I've been smoking for about 40 years but I went to the doctor's yesterday and was told it isn't on my chest and I just have a viral throat infection. Unfortunately I had a couple of coughing fits in the night and the sore throat kept me awake once that had stopped so I was too tired to go into work today.
I'm still not very good at accepting I can't do everything all the time. I don't want to sit at home storing up energy, I don't want to take sick days off work. I find it hard to justify to myself taking days off work because I'm tired or because I have a throat infection, things that previously wouldn't have prevented me from going to work. I worry about what my colleagues will think of me for taking time off with seemingly minor things. I agonise about taking time off, thinking of all the reasons I shouldn't - 'I can't take time off for a cold', 'I can't take time off just because I'm tired', 'I can't leave everyone with my work to do...again', 'what will everyone think?', 'I'm worried about the number of sick days I'm using' and I need to then weigh that against my ability to physically get out of bed, drive to work safely and my ability to do my job - I have fallen asleep at my desk before and drooled on my hand! They say that in your 30's you develop more self confidence and care less about what people think of you - have only turned 30 8 months ago, this has yet to happen to me, but I'm looking forward to it!
But today I have stayed off, partly because I feel so rubbish and tired and partly because my boyfriend James really wants me to look after myself and my health and believes I should but that ahead of everything else, even work. I would totally agree with him if it wasn't about me lol. I'm good at finding a reason why I should be in work. Maybe I should try to look after my health more in the hopes that I won't suffer with PVFS for years on end.
Here's to being back in work tomorrow... ;-)
Wednesday 13 August 2014
Symptom of the week...
Crying.
I know some people find crying cathartic but I have always hated it. I've never cried at a book or a film - usually causing my friends to playfully (I hope!) call me 'heartless'. So to my dismay, crying has become a relatively regular thing these days and the worst thing is, it's usually over absolutely nothing! At times it can be a case of feeling slightly sensitive so something said sets me off or it can be completely self-involved and I'm just feeling sorry for myself.
I can just be driving to work and I'll burst out crying. I do try to fight it as long as I can but then that first tear will just trickle over the edge and start off the cascade. Luckily it usually doesn't last very long, though there have been mammoth sessions where I just can't stop once I start.
It almost feels like I've reverted to a child like state, where the the more tired I am, the more likely I am to cry. There are usually less tantrums though and I'm happy to go to bed, unlike a toddler.
I have had a couple of crying sessions this week, the latest being this morning, I sat in my car for 10 minutes before I was able to leave for work and safely drive. There was no trigger, no build up, it just happened.
My poor (amazing) boyfriend James has been suffering along with me and has now come to accept this as part of the continuing issues. It's hard to explain that there's no reason behind it but he's a brilliant guy and very understanding and patient with me :-)
Does anyone else suffering with chronic fatigue syndrome/ME/post viral fatigue syndrome ever feel the same way? - anyone figured out a good way to stop the tears?
I know some people find crying cathartic but I have always hated it. I've never cried at a book or a film - usually causing my friends to playfully (I hope!) call me 'heartless'. So to my dismay, crying has become a relatively regular thing these days and the worst thing is, it's usually over absolutely nothing! At times it can be a case of feeling slightly sensitive so something said sets me off or it can be completely self-involved and I'm just feeling sorry for myself.
I can just be driving to work and I'll burst out crying. I do try to fight it as long as I can but then that first tear will just trickle over the edge and start off the cascade. Luckily it usually doesn't last very long, though there have been mammoth sessions where I just can't stop once I start.
It almost feels like I've reverted to a child like state, where the the more tired I am, the more likely I am to cry. There are usually less tantrums though and I'm happy to go to bed, unlike a toddler.
I have had a couple of crying sessions this week, the latest being this morning, I sat in my car for 10 minutes before I was able to leave for work and safely drive. There was no trigger, no build up, it just happened.
My poor (amazing) boyfriend James has been suffering along with me and has now come to accept this as part of the continuing issues. It's hard to explain that there's no reason behind it but he's a brilliant guy and very understanding and patient with me :-)
Does anyone else suffering with chronic fatigue syndrome/ME/post viral fatigue syndrome ever feel the same way? - anyone figured out a good way to stop the tears?
Monday 4 August 2014
Under construction
Dear all
As this blog is very new, it's still under construction so I apologise if you can't find the information you're looking for. It's not finished yet but I promise you I am working on it and hopefully it'll be fully up and running soon. I've ended any pages/posts with TBC so you know it's not the finished article yet. Although I do have to say that there may (ironically) be periods of quietness if I'm too tired to update it!
If you'd like to get in touch if there's anything on here you'd like to see or you'd like me talk about then please get in touch by commenting :)
Thanks
Catherine
As this blog is very new, it's still under construction so I apologise if you can't find the information you're looking for. It's not finished yet but I promise you I am working on it and hopefully it'll be fully up and running soon. I've ended any pages/posts with TBC so you know it's not the finished article yet. Although I do have to say that there may (ironically) be periods of quietness if I'm too tired to update it!
If you'd like to get in touch if there's anything on here you'd like to see or you'd like me talk about then please get in touch by commenting :)
Thanks
Catherine
Sunday 3 August 2014
Hello
Hello and welcome to my new blog :)
My name is Catherine and I was diagnosed with Post Viral Fatigue Syndrome in April 2014 - so I'm a relative newcomer to it and already bored with it - following a period of illness with pneumonia and pleurisy and then pyrexia of unknown origin.
I can't imagine what it must feel like to have it for an extended period of time, especially if it's severe. Luckily I have a mild form of it and so manage to hold down a full time job, but doing so does mess with any kind of social life I had and also a side business I used to run.
I'm tired (pardon the pun) and embarrassed of giving the excuse of being tired to my friends and family for not going out or meeting up. It feels like such a lame reason; surely it's not difficult to just have a lie in the next day and catch up? If you suffer from this or are close with someone who does, then you know it doesn't work like that, but trying to explain it isn't easy and it's often easier to go with the excuse of not feeling well.
I won't go into much detail in this first post about how it all started with me etc. I want this blog to be a number of things - a source of information (mostly by the way of links to medical websites as I don't claim to be anything close to an expert), a bit of a foray into the ups and downs of living with this and the different things I try to improve my symptoms and a place for fellow sufferers and their families to realise they're not alone. Everyone is free to comment with their own experiences :)
I look forward to being there with you and hearing from you
Catherine
My name is Catherine and I was diagnosed with Post Viral Fatigue Syndrome in April 2014 - so I'm a relative newcomer to it and already bored with it - following a period of illness with pneumonia and pleurisy and then pyrexia of unknown origin.
I can't imagine what it must feel like to have it for an extended period of time, especially if it's severe. Luckily I have a mild form of it and so manage to hold down a full time job, but doing so does mess with any kind of social life I had and also a side business I used to run.
I'm tired (pardon the pun) and embarrassed of giving the excuse of being tired to my friends and family for not going out or meeting up. It feels like such a lame reason; surely it's not difficult to just have a lie in the next day and catch up? If you suffer from this or are close with someone who does, then you know it doesn't work like that, but trying to explain it isn't easy and it's often easier to go with the excuse of not feeling well.
I won't go into much detail in this first post about how it all started with me etc. I want this blog to be a number of things - a source of information (mostly by the way of links to medical websites as I don't claim to be anything close to an expert), a bit of a foray into the ups and downs of living with this and the different things I try to improve my symptoms and a place for fellow sufferers and their families to realise they're not alone. Everyone is free to comment with their own experiences :)
I look forward to being there with you and hearing from you
Catherine
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