Saturday, 29 March 2014


I have frequently felt very alone since being unwell. Losing a great deal of my independence knocked my confidence. At times, I've felt as if I've lost my identity and as a result have felt disconnected from myself and others. I've not only struggled with this feeling of isolation when actually alone in a room but also when in a room full of my favourite people.

Despite being extremely fortunate in having lots of lovely people who I know I can talk to, it has been very hard at times to shake that isolated feeling. As with most things since being ill, the more time that has passed the better I've learned to deal with the tough bits. I do still feel lonely at times but now know the things that help me to overcome it.

Here is a little list of the things that help me:

Doing something

It doesn't matter what it is. It just helps to be doing. A tiny bit of tidying up, having a wash, working out what I'd like to have for dinner, listening to an audiobook, (fantasy) online shopping, colouring in, filling in my one sentence journal, playing a silly game on my phone, taking my tablets... Anything. As long as it's not just lying down doing nothing. When I feel most alone is often when my confidence is lowest. Doing something makes me feel like I'm being a bit productive and gives me that little boost I need.

Cuddling something

My dog, Teddy, is the best for this.

Making a connection

Often what puts me off contacting someone is that I have very little energy. If I've not spoken to someone in a while, I'm not always up to a proper catch up and so would feel guilty starting a conversation that I probably couldn't manage following through fully. The longer I don't talk to someone, the less connected to them I feel which makes it even more difficult to get in touch.

I've recently decided that very little contact is better than no contact at all and have found just sending someone a quick hello text can make me feel loads better.

If real interaction is a bit challenging, finding someone new/ interesting/ inspiring to follow on social media can make me feel that much more connected to the world.

Getting off Facebook

If I'm feeling a bit lonely, spending time scrolling through Facebook can make me feel so much more so. It's all too easy to think everybody but me is having a wonderful time every second of the day while I am not able to do much. Of course I know in reality that this is not the case and I am genuinely happy to see friends having a good time. It's just hard sometimes not to feel envious when I see pictures of other people out and about doing things I'd love to be able to do but can't.

Telling someone how I'm feeling

It seems silly that just saying 'I'm feeling lonely' out loud can make a difference but it definitely does. Being able to be that open with someone (even if it is my dog) and share whats going on in my head seems to automatically remind me that I'm not actually alone. I know that some people find it useful to write down their feelings. I haven't actually tried this but would definitely consider it in the future.

Doing something nice for someone

Writing a friendly note, buying/making a present or letting someone know I'm thinking of them always seems to help.

Have you experienced that lonely feeling? What helps you when you feel like that?


Monday, 24 March 2014


When deciding what to write about in this blog, I've tried to think about what would've helped me when I first fell ill. Although there were plenty of practical things that I would've liked advice about, one of my biggest (and perhaps most irrational) concerns was how to respond when anyone asked what was wrong.

A harmless, well-intentioned enquiry about what exactly my illness is would send me into a state of panic. I had no idea how to quickly summarise the extensive list of symptoms, all of which were 'invisible' to the person asking. I was so conscious that I didn't appear sick or in pain that I was convinced they'd think I was making a fuss over nothing. In my panic, I would rarely manage much more than "I'm just so exhausted" in response. This would leave me feeling extremely unsatisfied and embarrassed. It barely scratched the surface and in no way reflected how difficult it had become to function on a day-to-day basis.

As time has gone on and I've got to know my illness better I've slowly built up a sort of script for answering the 'What is ME like?' question in a way that I am comfortable with and leaves me feeling satisfied. Having just a few sentences in the back of my mind that I can roll off has done wonders for my confidence when talking about ME and saves that horrible panicky feeling.

I always start by being honest and saying:

'It's quite difficult to sum up because there are so many different symptoms but a lot of the time it feels like I have the flu and a horrendous hangover combined'

This means that however far I get with my explanation, I cannot come away feeling that I have done myself the disservice of dismissing it as 'just being tired'.

I may then add:

'I have very limited physical and mental energy supplies which makes it very difficult to do a lot of normal everyday things like having a bath or reading a book.'

Stating 'physical and mental', helps me to feel that I have covered the breadth of symptoms and reinforces that it is a physical illness.

And then, if the person is still with me and appearing interested I might add:

'If I do too much, I often pay for it later and will have to spend lots of time in bed until I recover'

Post-exertional malaise, or payback, is such a significant part of ME that it only feels right to mention it.

I know most people are after just a very quick description and so I am always conscious to not go on for too long. How much or how little detail I go into varies from person to person but these few sentences have provided me with a nice framework to start me off and cover what is important to me. I now find it much easier to talk about my condition and am far less often struck dumb when asked to describe it. These are sentences that work for me as they cover the aspects of my illness which I would like to get across. I'm sure other people with the same diagnosis have other go-to phrases which work for them.


Thursday, 13 March 2014


I like to think of myself, on the whole, as a 'glass half-full' person. Like everyone, I have my wobbles and down days, but can generally find a positive spin to put on most situations. 

Since falling ill however, I've experienced a huge sense of loss. A loss of my ability to work, socialise, exercise, travel, look after myself and generally go out and make things happen in the way I normally would. It's been all too easy to feel very low and bemoan everything I'd like to do but can't. When feeling particularly reflective one day, I realised just how negative my general mindset was becoming. It took me aback and left me feeling a little embarrassed and upset. A   t this point, I started to look at how I could get myself back to my more upbeat self. 

During poorly days at home by myself, I quite often look out for lovely things on Pinterest. I'm not normally one for sharing inspiring quotes, but this one really jumped out at me.

It seems so obvious that when things are difficult, it is even more important to focus on the little rays of sunshine and things you are grateful for. However, on reflection, this is not something I was actually doing at all. In my preoccupation with everything I couldn't do, I was failing to even consider what I could still do, what I could be grateful for and what still made me feel like me. 

Having digested this revelation, I wrote a list of everything I could still manage and everything that made me feel lucky. My extensive list showed me that although I had lost a lot of what was normal to me, there was plenty left to feel good about. I felt twinge of regret for my recent negativity when I realised I have some of the important things (eg support from friends and family) in abundance.

It was all well and good feeling positive on a day when I'd actually been able to think clearly enough to write a list, but I couldn't work out how I was going to translate this into something that could help me longer term. Some days with ME are really tough.  Although I know there are lots of things that I can be thankful for, it can be very difficult to use these broader positive ideas to counter negative thoughts that arise when I am finding specific 'everyday' tasks difficult or I've not managed to get out of the house in a while.

While attending an Occupational Therapy Fatigue Management group, something that came up time and time again was celebrating the little achievements rather than stressing about what wasn't getting done. It took me a long time to take this on board as I am all too prone to look at the bigger picture; but more recently I've got there. Giving myself a little pat on the back for anything that I do achieve, no matter how tiny, has made a huge difference to my overall outlook. 

I love having a record of things and being able to track how I'm getting on so was very excited when I stumbled across my 'one sentence a day' journal on Amazon.

It is perfect for 'cultivating the habit' of picking out positives when you have very little energy. Under each day in the journal there is enough space for one thankful/ positive sentence. Now that I'm in the habit of using it, I find that it is a great way to quickly bring me back on a daily basis to that 'grateful' way of thinking I found when I wrote my huge list. Sometimes my sentences are as simple as 'Made my own lunch today!', 'Got out of bed when I didn't think I was going to manage it :)' or 'so nice to see ...... today!'. Although they are often only little things, recording them is really satisfying and reinforces that things most certainly are not all bad. Having stuck with it for over three months now, I find the positives come to me so much quicker and I often have to be selective as I can't fit them all in my one sentence! If I'm feeling really low, I'll have a quick flick through and it really does help give me a bit of perspective.

I would definitely recommend giving this or something similar a go if, like me, you find it hard at times to see past the 'can'ts'.


Saturday, 8 March 2014


Wobbly legs, achey arms and dizziness can make washing more of a chore when you are chronically ill.  I find that I don't always feel very stable standing in the shower and that raising my arms to wash my hair can be very painful. Having on a few occasions overestimated my abilities, fainted and narrowly avoided injury, I realised I needed to look at the changes I could put in place to make my washing routine easier.

I tend now to opt for a bath rather than a shower. It's made a huge difference as it completely removes the fear of wobbly legs and has the added benefit of being great for my achey muscles. I have to be careful getting out of the tub as I'm prone to dizziness on standing but if I let the water drain and take it very slowly I'm generally ok. When I haven't been able to have a bath I've used a small stool in the shower. This has been great too as I don't have to worry about my legs.

Before I go to wash, I've started to lay out some towels out on my bed. This means that if I'm not feeling so great after the exertion of washing, I can make my way straight to my bed for a little lie down and a rest. When I was first feeling unwell I resented having to stop and recover after something as normal as having a bath but have now learnt to love that little bit of rest time in the morning. It's perfect for listening to a bit of music or watching a bit of mindless tv!

The best change I've made in terms of making washing easier is to my hair. Pre-ME I'd always had it very long and loved it that way. With the achey arms that come with ME however it was very difficult to manage. I "umm-ed and aah-ed" about getting it cut for a while, worrying it wouldn't suit me and it would take a very long time to regrow. Eventually though I just went for it. While it was being cut I was terrified but the second the hairdresser held up the mirror for me to see I knew I'd made the right decision. I was really pleased with how it looked. I loved it even more when I came to wash it and it took a fraction of the time it had taken previously. I don't know if I'd like it to be short forever but for now it is perfect.


Friday, 7 March 2014


Fatigue has made reading, which was once easy and relaxing, far more difficult for me. I now find it tricky to focus on pages with small print, am prone to accidentally re-reading the same sentence ten times over and if I struggle on for too long come away with a bit of a headache.

Initially I found this extremely frustrating as I've always enjoyed reading, but I soon decided that rather than give up on it entirely, I'd work on keeping it up at the (admittedly far lower than I would have liked) level I could manage. After a bit of experimentation, I worked out that reading for between 5 and10 minutes didn't leave me feeling so exhausted. I made this my target for each day. I also realised that I found larger text and simpler language easier to read. I got my boyfriend to dig through the large print section of the library for me but there wasn't much there that appealed to me.

This is when I realised that I had the perfect excuse to revisit some of my favourite children's books. They were ideal as the text is large, they are easy to follow and they would not take me forever to finish at 5 minutes a day! I've loved going back over stories I remember from when I was little and have really enjoyed getting to know other classic children's books which until more recently had passed me by. Being ill can be stressful and uncomfortable and I've found dipping into some lovely children's books to be a nice escape!

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