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...