Guest blogger - what it's like to live with someone with Chronic Fatigue Syndrome

Hello all

Those who suffer with CFS/ME know what it's like to live with it, but how does it affect the people we live with? Those who care the most about us?

It's a question that has interested me and so I asked my boyfriend, James, if he would consider being a guest blogger on here and writing from the perspective of living with someone with this chronic illness. We have been together for 2 and a half years and living together for the last 8 months - so not very long in the grand scheme of things. Interestingly, we've not lived together in a period of wellness yet - though I very much hope this will happen in the future.

I have to say I was very moved by what he wrote and I want to share it with you all as maybe you have all had doubts the way that I have.

Catherine asked me to write a blog post about what it's like to live with someone who is suffering from CFS. My first reaction to that is it's probably not as bad as she thinks. Catherine is the type of person who worries about others more than herself, which is a wonderful quality. As such I think sometimes she worries about how her illness is affecting me, that I might be frustrated with her and even think about leaving. But that's not the case at all, I find it easy to be patient with her, much more than I think I would be patient with myself!

Having said that, of course it does affect me. Her illness has limited our opportunities for doing things together, like going out in an evening for a meal or for some drinks. I'd still like to take her out on dates but it's not so easy now. There are things we used to do much more often before she developed the illness that I miss doing now. But despite all that it's ok, because we're still together, and I'm happy to be with her even if it's staying in with some wine and the TV, and to be a shoulder for her to fall asleep on at ten o'clock.

One thing that's difficult sometimes is having to convince Catherine to take a rest, for example to call in sick when she's not feeling so well. She always wants to just get on with things which I really admire (I rarely waste an opportunity to call in sick), and she's determined not to let the illness get the better of her. But I see it from the other side, I don't want her to push herself too far and make things worse.

But perhaps the biggest way it affects me is how upsetting it is to see her be unable to do the things she wants to do, to feel unwell so often and to go for so long without simply having a day where she can say “I feel good today.” That's the hardest thing. She doesn't like to upset me but as I remind her, that's the deal when someone really cares about you!

I desperately want her to get better, for both of our sakes but mostly for hers. It won't happen straight away, but in time with the right approach I know she can get back to how she was before. Catherine has been wonderful in helping me through my own problems and I'm determined to do the same for her. 

Treacle Days

Hello

Do any of you experience treacle days?
It's an odd feeling really and applies to both physical and mental tasks - essentially I feel like I'm trying to wade through treacle trying to get anything done.

Physically I find that I move much slower and seems to take me ages to do anything and I also tend to drop a lot of things on the floor! Feels like my fingers don't close fully, they feel quite weak, as do the muscles in my legs and arms and I feel a bit shaky.

Mentally, it's very similar to brain fog, just treacle flavoured ;-) lol. Takes a while to think things through, concentration/attention span drops to the floor (possibly below sometimes ha ha) and I seem to forget what I'm doing or why or what I need to get done. It feels a bit surreal/dream-like, almost like I'm moving in slow motion while everyone else is speeding by. These are not my favourite kind of days.

On the plus side, I've not picked up a new infection for about 2 weeks now! (cross fingers, toes, eyes, touch wood etc etc) and long may that continue - at least let me get through my birthday and Christmas - too many good things coming up to be ruined by fatigue and pain.

I have my Superman pin badge on today which is there to help me through the bad days :)

I'd like to always end these blogs on a positive note I think, I don't like being all moany, don't want to depress everybody out there! so 3 positive thoughts for the day:
1. I don't have an infection
2. Yummy spag bol for tea tonight
3. Amazing hugs and support from my boyfriend to come later :)

Keep smiling everyone
x

#mecfs #spoonie #spoonieproblems

Back again

Hello again

It's been quite a while since my last blog post. I've not been well for a while, picking up one thing after another which has also increased my fatigue so writing a blog post has unfortunately felt like too much effort.

Although I'm not feeling back to normal, I am currently off sick, giving me a chance to write a short post.

I just wanted to let you all know that I have officially been diagnosed with chronic fatigue syndrome by the Tropical and Infectious Diseases clinic - I'm not entirely sure why I was at this clinic for fatigue but never mind, it has led to me being referred to Chronic Fatigue Syndrome Therapy Service.

According to the literature I will be invited to attend a CFS group information session run by the CFS Therapy team. The Therapy team consists of health professionals that include a clinical nurse specialist, occupational therapists and clinical psychologists.

The group will be 90 minutes long and aims to provide users with an understanding of the causes of the symptoms, learning how to manage to condition in a more helpful way and how to stop further deterioration. We will be informed about the approaches used by the CFS Therapy service which include pacing, graded activity and Cognitive Behavioural Therapy (CBT).

After this initial group session, it is up to each individual to decide whether or not we feel we need further input from the therapy team. You can then attend on a regular basis for one to one sessions, though unfortunately only a maximum of 12 sessions can taken as long term therapy isn't available within this service.

I'm really hoping this will be the first step towards feeling much better and with the help of my lovely boyfriend James I know we'll make it through to the other side.

Chocolate challenge fail

Hello all

You may (or may not) have noticed that I didn't seem to get very far in my chocolate challenge, or at least I didn't do well in writing about it!

I managed to complete 3.5 days of it before I got an upset stomach (totally unrelated to my chocolate intake - I hope!) and couldn't really face 45g of chocolate per day. In the short amount of time I did do it for, I can't say I noticed a difference but perhaps being unwell with a bad cough and sore throat - which is now in its 5th week - was not the best time to start it as I was already feeling worse than usual. For the sake of science ;-) I'd be willing to attempt it again once I get over this cough and am back to just the 'usual' tiredness

If anyone wants to get in touch with me or follow me on Twitter, I'm @CFS_MEsupport

Also if there's any specific #MECFS topic you'd like to chat about, feel free to send me a message, or comment below, especially if there's anything you'd like me to look into :)

Catherine

Chocolate challenge Day 1

As you'll have seen in my previous posts, I'm conducting my own (un)scientific study into the benefits of eating 15g dark chocolate 3 times a day in order to help ease chronic fatigue syndrome symptoms.

Yesterday was Day 1 and I dutifully ate my 45g of Thornton's dark chocolate, spread throughout the day. I can hear you all saying how brave I am, how difficult it must have been, but I did it, all for the sake of science :)

The chocolate is going to have its own challenge with me this week in its attempts to improve my well being as I was feeling increased levels of tiredness after baking on Sunday and decorating cupcakes on Monday evening after a full day at work plus travelling. So I have to say that after 1 day, I'm not noticing any difference in symptoms. To be fair, I hadn't expected to yet so I'll keep plodding along with it and let you all know how it's going

Chocolate Study

After posting about the study that had been conducted into the correlation between dark chocolate and improvement in chronic fatigue symptoms (see article here), I decided to conduct my own (un)scientific study.

I know it's such a chore to replicate a study involving chocolate but I will do it for the sake of important research - somehow I'll manage to get through it I think ;-)

The original study involved eating 15g of dark chocolate 3 times per day and the results showed that symptoms eased in those who followed this regime.

I know it may seem quirky and I can understand any scepticism anyone may have about it but surely if there's something that can help to ease symptoms, even by a small amount, then it's worth giving it a try?

I have bought some yummy Thorntons chocolate to eat and will be starting my test tomorrow (it was going to be today but I've just realised it's 15g 3 times per day and not 15g per day, d'oh!) and continuing for one week and I'll report my daily findings :)

Let me know if you plan on giving this a try at the same time!

ME misdiagnosed?

Hi everyone

I saw a headline on a newspaper back in June when we were rushing through Manchester Airport to catch a plane to Barcelona that claimed a third of ME diagnoses were incorrect!

I completely forgot about it until recently and then I'd forgotten which newspaper it was in but today James found it and sent me the link and I thought I'd share it with you all as it's an interesting read. http://www.telegraph.co.uk/science/science-news/10904532/ME-one-third-of-patients-wrongly-diagnosed.html

I feel in some ways this could be more accurate to my symptoms, especially as something I've experienced throughout the pneumonia and which continued once that had cleared is a high heart/pulse rate (otherwise known as tachycardia in the medical industry). I'm not sure how to go about getting tested for this or even who to ask about it as it would appear, from what the article says, that many medical professionals haven't heard of the condition.

In addition to this article James also came across another article that claims that dark chocolate appears to help sufferers of chronic fatigue syndrome: http://www.telegraph.co.uk/health/healthnews/8154796/Chocolate-may-ease-symptoms-of-chronic-fatigue-syndrome-research.html
Now this is something I could get on board with! I LOVE dark chocolate. I'm actually considering doing my own completely unscientific 'research' and I think I will eat 15g of dark chocolate a day for 1 week and I'll start this on Monday. I'll keep you all updated with my progress. The worst thing that can happen is I've enjoyed a small amount of chocolate per day and at its best, it could help. So let's see what happens...

Moving forward

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.

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

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!)

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... ;-)

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?

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

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