On the 13th May, as part of M.E Awareness day, Action for M.E held an event at The Scottish Parliament. I was asked to go along and speak at the event, about working while living with M.E. The best part was Laura got to come along for the ride too! Here’s a picture of the two of us and also a copy of my speech.
Before we start, I just want to thank Kat and Action for M.E for inviting me to speak tonight.
My name is Samantha McInnes. I am 27 years old, an M.E sufferer and what would technically be classed as a work-a-holic. Now, I know what you are thinking: these are not two things that necessarily go to together (and yes you would be right). I would even go as far to say these two are, in fact, polar opposites.
Before I tell you how I became an M.E sufferer who spends most of her waking time in the work place, I need to take you back a few years to 2008. I was a politics graduate from Glasgow University who, while trying to figure out what to do with her life, managed clothing shops to pay the bills. Along with that, I was a very active individual. I ran 3 or 4 times a week; I was a regular hiker and, like most people in their early 20s, I liked to party. Hard.
After one such night of hard partying, I awoke with my mouth full of blisters. I’m not going to lie to you; this was not the look I was going for. Over the course of the next few weeks, my health drastically deteriorated; I had severe sore heads and just was generally run down. It was then I went to the doctor who ran some tests and told me that I was fighting off a pretty bad virus and, in a few weeks, I would be back to my old self. A few weeks came and went and the doctor was right; I felt OK again. I even started running again.
Unfortunately, after a few months I had to stop as, instead of doing my usual and spending an hour running several miles, I struggled to leave the borders of my small town housing estate. I constantly had severe sore heads; my body was always in pain; I stopped going out as much. As time went on, exhaustion took over. Two years after I had that virus, I was finally diagnosed with M.E.
Over the next 8 months I spent the majority of my time in bed or attempting to go to work. I tried to push through the ME barrier and failed every time.
Finally, in February 2011, I hit my lowest point.
I went to Manchester for a conference for work. My legs became extremely sore and weak. I spent the next year learning to walk again and the next year and a half using walking aids.
During this time many people said to me, “Samantha you may never be able to walk again, never mind work,” and do you know what I thought? “Na! Not me! I am beating this.”
I knew that it would be a long time before I could even attempt to go back to work in the shop again. Even though I was physically exhausted and in a lot of pain, I figured that I could probably spend around 30 minutes, 3 days a week, writing on my computer.
So I did.
I started a blog from it, telling an honest and extremely funny story about what it’s like to be a walking-stick-wielding 23 year old living with a long term health condition. Now, many people look at me strangely when I describe my blog as being funny, but I am a very positive person and part of that, I think, is because I can always find humour in every situation. It’s amazing how the funniest things can happen in the worst moments and, if you check out www.samandme.org, you can read all about mine. (Yes, that was a shameless plug).
After a while I thought: you know what I could probably spend another hour every so often doing something else now… By then, a lot of people who followed my blog had contacted me looking for someone to speak to. As a result, I started a support group. We met once a month a discussed the realities of living with this misunderstood condition.
Exactly one year after my legs stopped working, while still using my sticks, I returned to the workplace. There were several reasons for this. Firstly, I missed having something to get up for in the morning: a purpose. It’s really depressing getting up in the morning knowing you have nothing to get up for. It’s amazing how much of your self-worth can be wrapped up in your career. I also genuinely hated being on benefits; I am a proud independent individual but mostly I found it very stressful. When you are that ill you can’t walk to the toilet, the last thing you want to have to do is have to prove with forms that take hours to fill in and appointments with individuals who aren’t necessarily concerned for your well-being.
I understand that these measures are in place because some individuals do abuse system. I get that, I really do. However, when I was at the lowest point of my life, all these measures contributed to was stress that made my condition worse.
I would like to tell you my road back to work was an easy one, but it wasn’t. The company I worked for at the time had possibly the worst HR department known to man. It would take them months to send out letters and, when they did, the information was out-dated or incorrect.
I was extremely lucky as my manager at the time was extremely empathetic and accommodating. Because of this, I managed to reduce my role within the company from manager to an administrator. This meant, instead of managing shops and being constantly on the go, I could sit behind a desk and check paper work: low impact and low stress.
This allowed me to start back work at a desk job doing two, two hour shifts a week (which, let me tell you, knackered me at first). For several weeks, I did nothing else but work for two hours 2 days a week and rest. After a while, however, it got easier. Over the course of the next year, through taking my time and working with a manager who cared and understood my condition, I managed to not only increase the hours I worked but also increased the time I spent working on the shop floor and being on my feet (by this time I was no longer using walking sticks). After a year I was finally able to work full time again.
That was two and a half years ago now. I no longer work in the shop as I have found my true calling in life; I am now a non-destructive testing technician. I know what you guys are thinking: ‘I don’t think that’s a calling Sam as we don’t actually know what that is.”
Well let me tell you, NDT is basically the testing of welds, castings and other big metal things using Ultrasonics, radiography and other sciencey type things. As you can imagine, this is not done in a nice office, it’s done out on site, on boats and big structures for the oil industry, which means I get to climb about like a kid in a playground. I now have a very manual and energetic job. I would not have managed this without the time help and support provided to me when I returned after being off for a year.
Do I still struggle with M.E? Oh yes, everyday! To be able to do the job I love and work full time, I have to sacrifice things. I can’t go to the cinema on a weekday after work without falling asleep. It really irritates my boyfriend as he pays £9 for a cinema ticket and I fall asleep after 30 seconds. I have to make sure not to exert myself too much during the week and make sure I get enough rest to enable me to get up and go to work everyday. It doesn’t help that I have also recently started my second degree, which now takes even more of the little spare time I have.
I am lucky as, once again, I have an employer who understands that sometimes I just get not well and can’t come to my work. My sickness for the whole of last year was 3 weeks, which for an ME sufferer is amazing! For an employer, however, that’s terrible. Nevertheless, they understand and support me when I am having bad times.
Today I am an M.E Sufferer who works full time, is studying for a second degree and runs a support group. Not to blow my own trumpet but that is pretty much unheard of. I would like to emphasise, however that I am the exception, not the rule. I would like to stand here and say I did it all myself through my strength and determination, but that would be a lie. I am standing here today telling you all this because I have amazingly supportive friends and family. I also found a physiotherapist who went above and beyond. Additionally, I was lucky enough to find the one person in massive UK wide company who understood what it was like to have M.E. and instead of writing me off , gave me chance to get back on my feet. She could have easily have said, “No Sam. You have 6 weeks phase in period and after that six weeks you need to be working full time and not in reduced role.” That may sound harsh however it’s a story I hear regularly at my support group. If that had happened, I would not been standing here today. I would have had a relapse and would still be trying to get over it.
It just goes to show you – if an employer takes the time out to learn about ME, and support those with it the rewards can be massive.
Thank you for your time and check out www.samandme.org