M.E. and the Single Person
I have been thinking how to write this article, and have come to the conclusion that it’s going to end up as something like Louise's piece titled M.E. My Story. I can only say how I have managed being ill and living alone as a single person; so, here it goes!! ...
Three years ago, in September 1998, I had a viral infection whilst working full-time for an insurance company; my job was telephone-based, dealing with car accident claims. It was also on a shift pattern working between 8am and 8pm; some weeks I would be working 8am-4pm, others 12pm-8pm, or anything in between.
Following the illness, I went back to work, but never felt properly recovered. I was always tired, felt ill and had lots of strange symptoms. One day I’d have a sore throat and go to bed early, the next day I’d be fine. This carried on until May 1999 when I had my 30th birthday – I had been on holiday in a caravan, and found I couldn’t do the things I would normally have done. I could not shop in the morning and go walking in the afternoon, or drive around all day looking at the countryside. In fact, I felt awful. I found myself sitting in my car in a car park, crying my heart out for no reason. So I decided that when I got home I would go to the doctor.
I was diagnosed with Glandular Fever, which was a relief as by then I’d decided I was going mad, and if life was always going to be like this I didn’t want to continue.
Living alone made life both easier and harder! I live in a flat with my cat Mogs, who was a rescue cat with strange attitudes and ideas! When told that I had Glandular Fever, I was given a sick note for six weeks; so went home and slept, and slept, and slept. Mogs wasn’t happy with this, as she used to be shut out of the bedroom, and would wake me up in the morning yowling and scratching the door. We soon came to an arrangement where I would leave the door open, so if she got worried about me she could come in. That meant most mornings I awoke to find a cat sitting on the bed quite happily watching me – a much better arrangement.
At first I would get up, feed Mogs, have breakfast and go back to bed; get up to have dinner, and go back to bed; get up to have tea, feed Mogs and go back to bed. Not a very busy life, but it was all I could do. This continued for a while, forcing myself to do things like food shopping. I would go to the supermarket and walk around slowly leaning on my trolley, and wondering what the staff would do if I passed out. I would get home feeling terrible and then have to get my shopping to the flat. Luckily, the lifts always work in my block unless there’s been a major problem, which is very rare. After getting my shopping in I would go to put my car in the compound, knowing I wasn’t going out again that day, and that if I didn’t do it immediately I would forget to do it. That had happened to me before, and I’d panicked, thinking my car had been stolen as it wasn’t where it should be – I came out of the front door of the flats and there was my car; I never leave it outside as it’s not safe, but feeling ill, I’d done just that.
After my six weeks off I went back to work, deciding I was better now. My doctor had referred me to the local hospital to see a consultant in infectious diseases, so I was going there every couple of weeks for blood tests. I didn’t really know why at that point, but quite honestly didn’t care. I was told my Glandular Fever antibodies were off the scale, and had tests to check my immune system. I was diagnosed as having Post-viral Fatigue Syndrome secondary to Glandular Fever, which seemed a fair description of how I was feeling.
At work things were getting harder – I went to my manager and told her of my illness, explaining that I’d been advised to do no overtime. The company expects everyone to do at least fifteen hours overtime a month, and I just couldn’t do it – so I got a letter from the hospital, and the company agreed I needn’t do the overtime. After a few weeks like this I found I just couldn’t cope at all. I would be dealing with people on the phone who had been in car accidents and were very shaken, and would find myself being irritable or even crying with them. One day I just couldn’t stop crying and couldn’t explain why, as I didn’t feel unhappy, just very ill. I was sent home and haven’t been back since.
At home I was back to resting, sleeping and doing very little. My flat was a mess, very dusty and full of cat hairs. Food was a frozen meal from the supermarket, as that was all I could cook. It went in the microwave or the oven, and I could sit down until it was ready – if I didn’t sit down, I was too tired to eat. Washing up happened when I ran out of cutlery or cups, as the frozen meals were eaten from the carton and thrown away. If I had a day where I felt well, I would clean the flat, move furniture and generally do way too much and make myself ill again.
Now I’m still off work but I have got into a routine which seems to suit me. I feel a lot better most of the time and only have occasional bad days. My flat is still rather messy, but now I can make sure the kitchen is clean and washing up is done. I go to the supermarket, but now I know that when I get home I can still do things which don’t need much energy. I don’t need to sleep all the time now, but still have occasional afternoon snoozes when I feel tired! I still don’t always do everything I feel I should within my flat. I’ll find that changing the bed can wear me out for the day, hoovering makes me ache, and general cleaning can be left until I feel up to it.
I now have two cats after gaining Amber in November 1999; she was a stray picked up by someone who couldn’t keep her. That was a very stressful time as Mogs didn’t appreciate the company, and Amber turned out to be pregnant and had to be spayed very quickly. I just couldn’t cope with kittens as well!! The cats get on well now and keep each other amused when I’m not up to much. They also keep me amused, and make sure I get up in the morning, which helps.
I am very lucky in my family – my Mum and Dad understand how I feel and take me out every week to make sure I get some fresh air, and a different view other than my flat. The days out are getting longer as I’m getting better, and usually involve a walk with their dogs, as well as lunch and shopping. If I need something heavy or awkward they are happy to take me to get it, and are always there if I have a problem. My parents were especially supportive, both financially and emotionally, last year when I started having problems with the benefits agency. My sick pay had finished and my Incapacity Benefit was stopped as they decided I was well. I put an appeal in and claimed rent and council tax allowance but was left living on about £40 per week, which made life very difficult. With help from the Citizens Advice Bureau and the Welfare Rights at Social Services, I was successful in my appeal and now have Incapacity Benefit and an insurance payment from my employers to live on, which has made life so much easier.
I enjoy living alone, as I feel that if I lived with others I would have to make more of an effort to join in and be sociable when I didn’t want to be, whereas I can relax and recover as I need to by living alone. At times it is hard work, but thankfully I have plenty of support. I am not exactly single from choice nowadays. I had some relationships that didn’t work out, and felt I was getting a bit old for clubbing, so I used to go to the pub with friends. I wasn’t looking for a man but wasn’t against the idea either. With feeling ill, I haven’t been able to go out as much and haven’t been meeting people. At the moment the thought of starting a new relationship and having to make the effort to get to know someone isn’t something I want to do.
In the future, as I get better, I would like to meet someone, as I don’t want to be alone for the rest of my life wondering what I’ve missed out on. However, at the moment I’m happy being single and having most of my social life via the computer. This way I don’t have to get dressed up to go out, or spend the evening feeling like I’m annoying everyone when I’m tired and can’t drink or dance! My way of life suits me, and I feel very lucky in being able to live like this. I have had to accept that I have a condition that affects my way of life, and have had to adapt my life appropriately. I have kept to a simple rule over the years of taking each day at a time. You can read more about this in my other M.E. Support article entitled CBT: My Experience.
Wow, where to start? A lot has changed and a lot hasn’t, it’s fair to say.
I was dismissed from my company under the capabilities assessment, so now I’m unemployed, which is hard to live with. It also means my health insurance ended, so now I live on Employment and Support Allowance (ESA) work-related group.
I lost Mogs, but Amber is still very much around and is still keeping me amused.
Due to the bedroom tax I had to move out of my council flat; as I was moving, I moved nearer to my parents for mutual support. It means I’m now in a two-up, two-down terrace, so have to cope with stairs, but it’s a small village where I can walk to the shops or my parents.
Health-wise it’s been good and bad. I developed depression after a bad time that didn’t seem to stop, so now I have good days and bad days. M.E.-wise I still get the symptoms but I try to manage them better. I don’t always succeed but overall it’s levelled off. I've also gained a liver problem, high blood pressure and arthritis; but then that’s life, not M.E., I guess.
I’m not able to work but I do voluntary work. I went on an Expert Patient Programme course in 2011, and later trained to become a volunteer tutor, so now I help run courses. It’s hard not to do too much, but feeling that I’m able to help people and learn new skills has been fantastic! It's really helped my confidence levels and I've met new friends.
Reading back what I wrote in 2002 is slightly shocking, and has made me realize just how far I've come, and how much life has improved. I'm still single but I have friends, and living in a village means I can get out and about so much more. Living nearer my parents means I see them more often, and it also means they aren’t half an hour away if I’m ill.
Overall it's fair to say life has changed, but in a good way. I'm happier than I have been, even whilst coping with depression, and I appreciate all that’s happened. If I hadn’t got M.E., I wonder if I would have liked the person I was heading to becoming – that work and money obsessed person who never thought of others. Instead I value time with people, I love being able to see the countryside and the flowers, and love time with pets. I take time to craft and make cards, do embroidery; enjoy looking at the beautiful side of life whilst trying not to think of the bad side. It’s still there obviously but it’s something I can put aside. It might not be the life I thought I was going to have, but it’s a good life.