Reflections on Life with M.E. by Jane Shaw

09th June 2023

An honest and open account of living with Myalgic Encephalomyelitis by longstanding M.E. Support writer Jane Shaw.

One of the first articles I wrote for M.E. Support was about my wedding and wedding preparations back in 2001. It is now coming up to that time of year again. I got married to Rob on my 30th birthday, so this year is my 52nd birthday and our 22nd wedding anniversary – where does the time go to? As well as being my birthday and wedding anniversary, the date has become significant in other ways down the years. On my 35th birthday I found out I was pregnant with my daughter following IVF treatment. This year my now 16-year-old daughter takes her last GCSE and leaves school on that date too. I had my Personal Independence Payment face-to-face assessment for renewal at the beginning of May; they said I should hear in about six weeks, which would have been just in time for my birthday, but with great relief I have just found out it has been renewed for another four years.

In the weeks leading up to my birthday/anniversary (and also Christmas/New Year) I find things very difficult as it marks the passing of another year where I feel I have made no progress and that life passes me by. I feel I miss out and have missed out on so many experiences over the years. I feel that my life is running out of time. I haven’t been able to work since the year 2000 and I have now not worked for longer than I did work, if that makes sense?

Emily is currently sitting GCSEs and trying to work out what she wants to do next. I feel like a bad role model and despite having two degrees to my name, most of the time I cannot understand anything she is learning. In the last few weeks, she has had many early and late starts at school due to extra lessons for exams and she needs taking to and from school at those times. I cannot even manage that most of the time and am lucky that Rob is still working from home following the Covid pandemic and he is usually able to take and collect her. This is a great help to me, but I feel so guilty as he has to take time away from work, even though it does not take that long, and he doesn’t mind. I feel like I live in a different world to everyone else. I am desperate to do some special activities with Emily once she leaves school as I feel I have missed out on so much of her growing up, but it is only possible now that she can push my wheelchair and communicate with people for me. Of course, it is not much fun for her, and no 16-year-old thinks it is cool to be seen with their parents, let alone one in a wheelchair who cannot hold a proper conversation. I do feel that having me as a parent has affected the way people view her. At parents’ evenings I had to ask to see teachers in a side room rather than be in the noisy and overwhelming environment of the school hall. The school has been good in facilitating this, but it makes us stand out like a sore thumb, which is the last thing I want for me or Emily. I just want to be able to fit in and be normal, and the same for her.

I was diagnosed with Myalgic Encephalomyelitis in 1998, so have officially had it for 25 years, but it is actually much longer and more than half my life. Whilst that is a long time it also feels not that long. In some ways I feel like my lift stopped then and that I have not progressed since then. Life seems to be measured by what job you do and how busy you are. Your job becomes your identity and your role, so I feel a bit like I don’t exist. When Emily was younger it was easier to identify as a parent and see that as my role, but now it feels more like she is a parent to me at times.

I find not being able to work soul-destroying, I am only 15 years off retirement age now and have no income or independence. I do know many people who have worked hard and been able to retire in their 50s, whilst I wonder and doubt if I will ever work again. I don’t know how to accept that I will never work again and be at peace with it, it still feels so wrong. People who do not work are viewed as lazy or scroungers and people who spend all day doing what they want. I am lucky that Rob has a reasonably well-paid job and that we can manage, but always wonder what we could have done if we both worked; life would have been very different, I am sure. It is also scary to have only one income and it makes it so vulnerable if Rob were to lose his job or become unable to work himself. This is not just a fear, I have seen it happen to so many people and it nearly became a reality for us when my Rob had cancer 17 years ago, and I still panic if he is unwell or during the frequent work restructurings when they are making people redundant.

To say that I don’t feel I have had a life since I got M.E. is unfair to Rob and Emily, as they have never known me well. I have had a good life with them, but not what I would have wished for, for me or them. I feel I have let them down in so many ways and that they would actually be better off without me restricting them.

Although I have been awarded PIP, I do not agree with the decision they have made and I am only two points off getting a higher rate, but the stress and effort required to get them to reconsider is too much. I hate how much I am restricted by the M.E. and the impact on everyone around me, then to be told that someone who doesn’t know you doesn’t believe how restricted you are, is difficult to accept. M.E. is so difficult to quantify and to explain and does not get the recognition that other illnesses of similar severity get. It feels as though if you mention M.E. people stop listening and just make their own assumptions. It is sad that I only get the lower rates of PIP, and I lost my Motability car in my 2019 review, as I feel so dependent on others, but getting more money wouldn’t make things any easier to do. It would help with the extra costs like hearing aids, a wheelchair, an estate car, but on the criteria questions I do not score very high and they say that because I drive and do crafts, I do not have the cognitive issues that I claim to have and that I can walk farther than I say I can.

As I am now almost 52, it is difficult to know if my M.E. is getting worse or if my difficulties are from me getting older and menopause. Many of the symptoms I have could be due to any of them. I am now known as “a woman of a certain age”; I was told this at an ear, nose and throat appointment to investigate why I have a permanent sore throat. There is a lot in the media currently about how debilitating menopause can be and I have that on top of an already debilitating disease, but that doesn’t seem to be taken into account.

It is always so difficult to know if symptoms are M.E. or could be a sign of something else and when it is worth getting medical advice and when to just accept it. I find that it usually comes down to a gut feeling that maybe something is not quite right, but then you have to convince the doctors of that. Since Covid, getting access to doctors seems to have become even harder and I have had telephone appointments for things that require examination, so they are a waste of time. I was given antibiotics just from an online form, for a chest infection that I didn’t have, and then ended up at a walk-in centre with what was actually a urine infection and then it got put in my notes that I was abusing antibiotics!! Also, during Covid a hospital follow-up appointment just disappeared, and I had to be re-referred and have only just been seen.

On days when symptoms seem much worse it’s not always obvious why; often you can think yes, I have been busier, so it makes sense, but not always. At the moment I am struggling with worse dizziness, pain and insomnia. I feel it may have been the stress of waiting for my PIP decision, Emily is doing exams, and because it is close to my birthday, emotions can have a big effect too.

Having M.E. is very isolating, not being able to go out much or socialise and not having the opportunity to form friendships. I mainly only go out either for an hour or two locally if someone can go with me or when I’m visiting family. Visiting family is time-consuming as they live an hour’s drive away, so we usually need to visit over a weekend as a day trip is too difficult. I have a personal assistant who is supposed to help me to do activities, but as she arrives at 8 a.m., there is not much we can do. I feel bad as all I ask her to do are household chores, but I really struggle to do them myself and it conserves my energy for being with my family or doing craft projects. If I was to organise to do things with my PA, it would mean some of the household stuff wouldn’t get done and I would be doing too much in order to give her something to do, if that makes sense. When I go out, I need someone who can get my wheelchair in and out of the car and preferably who can drive too, as my driving is limited to ultra-local ,so wouldn’t get us anywhere.

During lockdown I felt less isolated because everyone else was stuck in their homes and limited in what they could do. I didn’t feel like I was missing out, as there was nothing to miss out on and we didn’t have to justify not being able to see people. Like everyone else, we did use Zoom and I probably saw people more that way than I see people face to face, but now everyone is out and about again, and Zoom is only used for work meetings. We also had a kitten to look after and play with, so that kept us occupied.

In other ways lockdown was not easy for us. Rob was in a team analysing data and producing projections for the daily Covid updates and was working long hours, seven days a week and unable to take any time off. My PA was unable to come in, so we had no help, and Emily was doing schoolwork at home, which she hated. After the first lockdown my PA gave her notice as her own health had deteriorated, so I had to recruit someone else.

During the 2021 lockdown our cat was injured; we think she was hit by a car. She suffered a broken jaw and leg damage. We did not know if she would survive and were asked if we wanted to put her down as treatment would be expensive and not guaranteed to work. We opted to have her treated and her jaw was wired, and her mouth stitched closed. We had to tube feed her every three hours and give her painkillers twice a day and clean her wounds. This was something we all had to get involved with and actually brought us together and gave us something to focus on. She began to get a bit stronger and finally use her damaged leg, although she has been getting around fine on three legs! Her jaw was supposed to be wired for six to eight weeks, but after four weeks she pulled the wiring out during the night. The vet decided not to put the tube back in and unstitched her jaw to see if she could eat. There was no looking back then and she was soon back to normal and got a clean bill of health from the vet. We got a large bill from the vets, but it was worth every penny. She is quite a character and keeps us on our toes; she gives me something to get up for, literally! As a light-hearted job I created her a Facebook page and I add pictures and comments on things she has been up to. She also usually keeps me company when I am resting and is fast asleep at the side of me as I type.

Following on from Covid, Rob continues to work from home, which means I am never on my own, but it does kind of feel like it as he is working. I can ask him for help if I need it or have a five-minute chat if needed. I end up spending a lot of time upstairs so I can watch TV or do tasks without disturbing him. When he first worked from home he used the spare room to work, but that is where all my craft stuff lives and I was unable to do much with it.

I am unable to hear people very well and I don’t know how much of this is my hearing loss and how much is processing issues, I know people are talking, but just can’t work out what they are saying. I use subtitles when watching TV. The hearing loss means that I am unable to do things on my own such as appointments or craft classes, and I can’t use the phone. I mentioned using Zoom during lockdown, but it only meant I could see people, I still couldn’t have a conversation. Having text messages and messenger apps is great for me, but so many people now video call and I can’t do that either. It is just another thing that makes me so dependent on other people.

Going back to the wedding theme, you say the vows “for richer, for poorer; for better or worse; and in sickness and in health”. I think we have had enough of the poorer, worse and sickness and we must be due richer, better and health by now, but it doesn’t look like we will! I often think it’s not like a marriage as Rob has to look after me more like a child than a wife. If we go out together we can’t even see each other as I am in my wheelchair, so we can’t chat or hold hands. I can’t be independent of Rob and do my own stuff so he spends much of his spare time doing things that he doesn’t really want to do in order to help me. I would like to attend some craft classes, but it means that Rob has to go with me to help me follow what is being said and to help me with the tasks, so I stopped going as it’s not fair to him and they have got so expensive, and I usually end up leaving early anyway so don’t get much done. Neither of us has much of a social life; most of the people I know are online and most I have never met. I am usually in bed by 9.30 p.m., often before, and have to rest for two to three hours in an afternoon, so there is very little time to do anything once the daily routine is done. That is an average day; many days I can do very little at all and spend much more time in bed. We can’t even share a bed as I sleep badly and him moving around in the bed makes me really dizzy. I spend a lot of the night reading or watching TV so need to be on my own to do this or I would have to get up and go somewhere else. We do argue a lot as I hate being dependent and Rob gets fed up with me asking him to do things as it feels like I am nagging him.

One of the other people who has a main role at a wedding is the father of the bride. My dad died in 2017 so wedding anniversaries bring back memories. Father’s Day is always around my birthday too.

Another article I wrote for M.E. Support was about travelling and M.E. We used to enjoy travelling and going to places, but since Rob had cancer it is much harder: he struggles to travel with having to push me and manage luggage etc. It is a bit easier now Emily can help, but he was very ill on holiday last year due to the extra demands. He has been ill on many holidays since he had the cancer, and extra demands and change in diet and climate all seem to affect him; he also has a very strict medication regime due to having his pituitary removed. We would both love to travel more and see places, but driving is also restricted as Rob can’t pack the car, drive, push me around, then drive again. If we want to go anywhere it means we have to stay overnight, which of course makes it a much more expensive trip due to having to book hotels and cat sitter. It may get easier once Emily can drive, but by then she is unlikely to want to go away with us and we currently don’t have a car she would be able to get insurance to drive, due to the lease agreement. We will have to wait for self-driving cars. I get upset as I feel like it is me that makes him ill and that if I could do more it would be fine. We are very wary of holidays so are both stressed before we even go, which does not help.

I have focused a lot on what I can’t do, and this continues to be a big issue for me even after so many years. I have had lots of counselling to try and help me to accept my limitations and to be happy with my life, but it continues to cause me great distress. Every day I grieve for the old me and being able to be independent and working. People always want to know what you are doing or if you have a busy day, and I never know what to say, as the things I do don’t seem to count.

I enjoy craft activities and mainly make greeting cards. I have a website, but they don’t really sell as I don’t have the time and energy to promote as well as make, and I think cards are going out of fashion. I have a few friends who sometimes buy from me, but other than that I have to give them away. Over the years I have supported my charities, including Cancer Research and Brain Tumour Support. Currently I am involved with a hedgehog rescue charity, making things for them to sell, and producing information posters. It has not been easy as I made a load of cards for them and then they were asked not to sell cards at the fairs they went to, so I had to think of other things to make. I spend more time looking for ideas than actually making things! I always have a huge list of things I want to make and never get around to most of them. I lose concentration very easily and make lots of mistakes so get very disillusioned. I always want to be productive, but rarely get much made and feel bad as other people seem to produce loads. I am currently taking part in an online craft market, but I have only sold one card, whilst other people have sold loads and I get really upset. I can’t win really, as I get upset if I can’t sell things, but then get in a panic if people want me to make things and worry about letting them down.

I am a designer for a card challenge website, much grander than it sounds. We have to create cards on a theme. The group I am in is based on songs and rhymes. I have recently created cards for songs “Singing in the Rain” and “Swinging on a Star”, and rhymes “I wandered lonely as a cloud” and “Tyger, Tyger, burning bright”. The design team cards are then used to give examples and the challenge is opened to anyone who wants to enter. There are only six of us on the design team and not many entries, so it’s a very small thing. Three times a year I get to choose the song or rhyme; so far I have done a rhyme entitled “May” and my next one is going to be “Bed in Summer” by Robert Louis Stevenson.

For a few years I have been an admin on a Facebook parents page for Emily’s school; it has been very stressful at times and often overwhelming. I am standing down on my birthday when Emily leaves and whilst in some ways I will be glad to see the back of it, I will also miss it. I thought that I spent most of the time annoying people, but since I announced I was leaving I have had some kind messages and thanks.

I spend a lot of time lying down reading or watching TV. I enjoy reading, but don’t really take in much of what I read. I watch Netflix, currently working my way through Firefly Lane, and often make myself worse by watching too much in one go. During the night I spend a lot of time watching hospital and ambulance documentaries. The programmes are interesting, but I do get upset at losing my career in healthcare and feel guilty for complaining about my health when so many people are in much worse conditions.

I have a laptop and seem to spend hours sitting in front of it, I think it makes me look like I am working. In reality I am looking at craft ideas or scrolling through Facebook or the news, all of which upset me as I feel so useless or that I am missing out. I do have my own blog but go in fits and starts with it as it is another thing that seems pretty pointless.

I don’t have any ongoing treatment for my M.E. other than medication for many of the symptoms, some of which help more than others. I used to have private physio for pain and stiffness, but this stopped during lockdown and never resumed. I was told by my audiologist to try reflexology for relaxation, as she felt stress was making my tinnitus worse. I was very sceptical but thought if nothing else, it would be nice to have a foot massage. In fact the reflexology seems to help with my pain and stiffness and irritable bowel syndrome, despite often exacerbating it straight after treatment. It hasn’t made any difference to my tinnitus, which continues to be very distressing. I have treatment every two to three weeks and I am actually surprised that my reflexologist can tell what symptoms are bad without me telling her, and I can feel after the areas that she has worked on.

My hearing loss has a big impact on me, and I don’t know how much of it is due to my hereditary degenerative hearing impairment and how much is a processing issue caused by M.E. It makes me very isolated and makes socialising very difficult and physically and mentally draining. I have hearing aids which I have to pay for, as the ones the National Health Service provides are not suitable for my pattern of hearing loss. I know my aids need adjusting, but my audiologist has gone to another job. I have to decide whether to put up with it or to move to someone else and get new aids. I can’t really justify the expense, so at the moment I am putting up with it, but it’s very frustrating for me and my family. Whilst hearing loss is not a symptom of M.E. they feed into each other and make both hard to manage.

I am aware that this article feels very negative and pessimistic, but as I said at the beginning, a lot is due to my frame of mind at the moment due to my birthday now being next week. I cannot turn the clock back or change anything and time keeps moving on, whether we like it or not. I would love to be able to accept things and feel happier with how life is and be content with what I am able to do and grateful for what I have, but I haven’t worked out how to do that yet. I have had Cognitive Behavioural Therapy, but really struggle with it. I get the theory and want it to work, but it is difficult to put into practice. All I can think of is wanting to work, wanting to be independent and productive. I want to help people and make a difference for others, but always feel that I let people down instead.

I used to be quite involved with M.E. groups but have drifted away from them as I felt it was getting me down and I couldn’t cope with some of the people in the groups. Even online I think I am better at communicating one to one than in groups, which can be overwhelming or frustrating. When I was first involved, groups were quite small, but as they got larger, which is great for the hosts, it became harder for me to take part. I also wanted something that didn’t focus on being ill all the time, some light relief, so looked at other things such as craft and wellbeing.

I wonder what being 52 will bring? In reality I don’t suppose much will change: life will plod along and I will plod along with it. At our wedding we had the song One more step along the world I go, which many people may remember from school. Ironically, it was written in 1971, the year I was born. We do keep taking the steps, “from the old things to the new”, travelling “through the good and bad” and finding “courage when the world is rough”. On my birthday I may even do a bit of “leap and sing in all I do” (well maybe not leaping) at the Abba tribute concert we are attending. We had to plan something to mark a huge milestone for Emily as she and I love Abba. Abba formed in 1972 so I grew up with a lot of their music. I once wrote a blog post about their song The Winner Takes It All, and how it can relate to M.E.! I have done more than I think I have, but it all feels like just filling time, rather than doing anything worthwhile or meaningful.

If you feel the same or just want someone to chat to, I am happy for you to contact me or follow me on Facebook or my Crafty Janes website.