m.e and me
Hi Gang.
So this week marks my 9 year anniversary of the beginning of my M.E/CFS story and today (8th August) is Understanding Severe M.E Day. It’s strange because I was only thinking about writing down my story when Facebook memories reminded me of a post I made talking about the illness that triggered it all off. And so I guess since I’ve been around for a few weeks now, it’s time for me to talk about my chronic health journey, although not as severe as most, it is true debilitating for me.
It started in 2009. I was in my first year of university, working on the hospital wards for my first ever nursing placement. One Friday, I had the day off and I was supposed to go to the cinema with friends but I just couldn’t get out of bed. I felt so rubbish but I slept all day and assumed it was just fatigue after the 12 hour shift the day before. I felt slightly better on the Saturday and so managed to drive to Leeds for a night out with my sister and her housemates. My sister was at university in Leeds at the time but I think I spent as much time at her various houses as she did. I love Leeds and my sister would often call and invite me out last minute. My mum always wanted me to be confident driving on motorways and I definitely got my experience, driving back and forth.
What’s strange is I remember the night very specifically. It was a night with her two female housemates at the time, I know I threw up in the nightclub toilets (classy) but I wasn’t drinking all that much - it wasn’t a particularly heavy night and I don’t think I was very drunk, well, drunk for my standards. There has been many a drunken occasion, the worst being the time I was shoved in the back on the ambulance and monitored in A&E after I was sick in the club and fell asleep on the street. As this was mid January, my temperature had dropped and the paramedics must have being concerned I’d get hypothermia, which I’m told is the only reason I ended up in hospital and not the drunk tank (ie a police cell). Not my finest hour but I place all blame on my big sister. That’s why I made her pay the taxi fair home 😂.
The night before my hangover turned out to be flu.
Anyway, driving home that weekend, I felt horrendous. I felt like I had the worst ever hangover, I felt so poorly that morning that I cried all the way home. It’s lucky that Leeds is only about a 40 minute drive away because I definitely wasn’t safe to drive. When I got home, I probably went straight to bed and that’s the last I remember of the following three weeks.
I missed the last two weeks of my placement, plus spent one week on my uni break in bed. The following week was “recovering” before lectures started again. But as you can imagine it involved napping after showers, finding the energy to eat and drink and basically not knowing this was how my life would continue. At the time, my mum had contacted my doctor to ask for a sick note for me, as I was missing more that one week of work. It was suggested that I was experiencing Swine Flu (remember back when that was popular?) but as I was over a week into the illness, no further testing or diagnosis was done. There is a medication used to treat swine flu but would be ineffective for me as it has to be taken within the first 24-48 hours of symptoms.
The next few years are a general blur of constant headaches, breathlessness, panic attacks, anxiety in social situations, frustration at myself, at everyone else and at life. I missed so many university lectures and failed so many assignments that I qualified as a nurse by the skin of my teeth. Although, in my defence being undiagnosed as dyslexic didn’t help. My doctor at the time was very uninterested. Although hey told me I was “post-viral fatigue” they did little other investigations into the reason for my prolonged symptoms. Instead I was fobbed off with recommendations to reduce stress, lose weight and try harder.
After I finished University I moved away from home for the first time (my eight weeks at university in Chester don’t count, obvs). Within a short period, four weeks at the most, I had celebrated my birthday, celebrated my mums 50th birthday, had a trip to London, finished university and qualified as a nurse, moved nearly three hours away from home, started living with a girl I’d met once - in a town I’d only been to twice, and started a new job, my first proper job ever, as a community nurse. To say I crashed hard is an understatement. Luckily my new doctor at least wanted to explore some options before telling me I was stressed. He tested me for all blood tests under the sun - from B12 deficiency to HIV. Luckily nothing too serious was found, just deficiencies in Vitamin B12 and Vitamin D (which I took supplements for), a constantly raised white cell count (high enough to not be normal but not high enough to suggest a current infection), and a test positive for the Epstein Barr virus - meaning historically I have had Glandular Fever, although I have no idea when.
But again, these results were used to show I had “post viral fatigue”, now nearly four years after the initial episode of flu. My symptoms had progressed. I was now experiencing brain fog, lack of concentration, increased pain, difficulty sleeping and unrefreshed sleep on the occasions I did sleep. I had so little energy that I wasn’t eating, surviving on tins of soup, Lucozade and coffee. If I did eat it would be convenient foods - ready meals, take aways or something that only needed putting in an oven, no prep required. No wonder my illness has progressed when I wasn’t taking care of myself.
Fast forward to 2014. I’d moved back to Sheffield after landing myself my forever job. I was renting a massive and beautiful apartment and generally having a great time, being able to see my family and friends my regularly and celebrating Christmas, birthdays and weddings. I was also thrilled that I had finally found a doctor who, after just one appointment, referred me to the M.E/CFS clinic here in Sheffield, for an official diagnosis- which I got.
I was so excited to be home, but maybe that was why it all fell apart. When I was away, I would work all day, sometimes into the late evening when we were really busy, but other than the odd occasion my flatmate was home, I would be alone all night. I think I needed that time to relax and refresh ready for the next day. Coming home, having friends and family so close and being back somewhere so familiar, I found I was as active in the evenings as I was at work.
My flat. Decked out for a Eurovision Party.
My timeline gets a little fuzzy now, but I know it started after my uncles wedding in 2015. I had a blast, stayed up late, drank and chatted, spent time with the family I don’t see often enough, and generally just fun. So when Monday morning rolled around and I felt like I had the flu, I assumed I had just overexerted myself. I’ve never been too good at pacing myself. If I feel well and am having fun, I’m unlikely to go lie down and rest. Similarly, if I feel rubbish and can barely move out of bed, I’m not going to do a load of washing or cook a meal. I’m not good a reading my body, or knowing when to push myself or when to rest. I’m all or nothing, and unfortunately, the majority of the past three years, I’ve been just that ... nothing. It’s beyond frustrating and disheartening that, despite frequent and lengthy episodes of absences from work so I can “recover”, my illness seems to be progressive. It’s beyond frustrating and disheartening that when I discussed this with a doctor she recommended GET. Graded Exercise Therapy (GET) is a controversial program that suggests people with M.E/CFS (an illness that is exacerbated by exertion) can be cured with exercise. Whilst it is recommended in NHS guidelines, these have been created based on highly disregarded, discredited research.
I’ll add a link to information on the PACE trail at the end because I’m afraid that, if I start to explain about it myself, my rant will never end.
In Leeds for the wedding.
So this is how I live my life now. Aside from the daily pain, muscle weakness, fatigue, brain fog and poor memory, I’m constantly afraid to do anything incase I can’t get out of bed the next day. Afraid that I haven’t been to work in over six months and that I don’t know what impact returning to work will have. Battling the feelings of resentment, worry, hopelessness, helplessness, depression, anxiety and grief. Wondering what’s the point in carrying on if like will always be this hard. Having to pick what to dedicate my energy to. Some days it’s fine, and I have to pick an activity like changing my bedding or having a shower. Others days I have to decide if I have the energy to eat. Having to suck my pride, and give up my independence. Being unable to celebrate the small wins, like being a bridesmaid at a friends wedding without having to leave early or being overly tired or in pain. I was overjoyed at this, as I had spent the months prior, stressing about how I would cope or if I’d be able to make it at all. Being able to watch my friend marry her best friend was perfect and I was beyond happy that I was awake, alert and present enough to witness it, only to be told that a colleague at work had complained because they couldn’t understand why I could be at a wedding but not at work. I get it, I do - when work is a struggle and someone who is off sick is seen on social media having fun, it can be very annoying. But I felt like I’d been sucker punched in the gut. I was devastated and it altered the way I look back and reviewed the day. It also made me anxious about returning to work. I’ve never been secretive at work about my struggles and I’ve been very open and honest in social media about how I find certain aspects of life difficult now. So that general feeling of being unsupported or not been understood, was a little bitter to swallow. Several weeks on for this incident and I see with a little my clarity. I’m sure if the situation was reversed I would have felt the exact same, only not had the balls to say anything to our manager. And I’m positive that when I return to work (next week 🙀), everything will be fine.
Now I just need to figure out how to continue, how to read my body and know when to rest before a major episode like now. I’m trying the alternative medicines, as I’ve talking about here before, I’ve altered my diet and I try to drink more water - which has been pretty easy during the heatwave.
What do you guys do? Have you found anything that helps? Let me know ❤️
xoxo
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