ME Awareness Month: My Story – #May12BlogBomb

As you may be aware, May is ME Awareness month. There has been a call to action for all affected bloggers to write about the subject, as it is still an illness that is not fully understood. This is my story – it may not be how others have experienced ME, but I have written honestly about what I have experienced, in the hope that it helps people understand how devastating ME can be.  The following collages are photos from before and after becoming unwell:

PicMonkey Collage        PicMonkey Collage

What is ME?

ME stands for Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or CFS. In short, it is a debilitating condition that ranges from mild to severe. The most predominant symptom is severe fatigue all the time, which is not relieved by sleep. Sufferers also get what is known as ‘malaise’ after exerting themselves; malaise is a general feeling of unwellness. “Exerting yourself” for an ME sufferer can be something as simple as having a shower or walking a short distance.

Other common symptoms are pain (a big one for me, as I also have a related pain condition called fibromyalgia), muscle weakness, cognitive issues such as difficulty concentrating or memory issues and sleep disturbance. Often sufferers have frequent sore throats and feel flu-like. A lot of people with ME suffer from depression. I am lucky in that this hasn’t happened to me. I do get upset and tearful, but that is just down to being constantly tired and in pain. It isn’t easy sometimes!

My Story

A couple of years ago you could find me holding down a stressful full-time job, playing roller derby several times a week and going to the gym. Around that, I fit an active social life including going for drinks, meals and nights out. Looking back, I have no idea how I fit it all in!! These days, I feel like I’ve had a busy day if I’ve had a shower and washed my hair!

I used to be very active, fairly busy and also relatively fit. I caught every cold and bug going, but still maintained a full life. In hindsight, changes were happening up to a year before I was diagnosed, but I put them down to different factors like being tired or having a virus. I used to fall asleep a lot and have to go for a sleep on my lunch hour from work! I also used to have a lot of different aches and pains, but each issue was dealt with separately.

I started to realise that I had an issue a couple of years ago when I decided to write down all my symptoms and see if they gave me any clues as to what was happening… two pages later I realised something wasn’t right! I saw a nutritionist and started taking more targeted supplements, but sadly it had no effect.

I can pinpoint exactly the day I realised there was something wrong with me. I was driving back from a TMJ physio session at a local hospital and I just felt overwhelmed with how tired and unwell I was. I cried all the way home as I felt so bad (luckily I didn’t crash!) I came to the realisation that I couldn’t remember the last time I actually felt well (or even just ok!) I decided then and there to see a doctor and ask for some answers.

To cut a long story short, I went through a series of tests: blood tests, xrays, scans, an MRI. After several appointments and test results, I was diagnosed with ME/CFS. I was referred to the local ME Clinic and there began my journey of learning more about this condition.

Sadly I have deteriorated quite a bit since diagnosis. Initially I was working full-time and really struggling. I had quite a few sick days and eventually made the difficult decision to go part-time. Obviously this is difficult financially but I hoped it would help my ME to settle down. I dropped down to 4 days a week, with a rest day in the middle. At first this did help somewhat, but then I deteriorated further.

I had a big ME “crash” (a period of reduced health and mobility and increased symptoms) on Christmas Eve. I can’t describe how utterly ill I felt, but my Christmas was spent rather differently to other years! My mum had to make a ‘bed’ on her sofa as I couldn’t sit upright without support. My mum and husband opened all my presents for me as I simply didn’t have the energy to rip the paper open. I was so out of it that I couldn’t even remember half of the presents! I couldn’t sit through Christmas dinner and had to go back to the sofa and sleep. This was the start of a really bad period of symptoms, which I have only started coming out of in the last few weeks. The first 4 months of 2015 were a total wash-out!

Some things I used to take for granted but now struggle with are:

  • Showering/washing my hair: as a healthy person, you have no idea how taxing this is. If you’ve ever had flu, think back to your first shower and how exhausted you were. You probably had to either put it off a few days or rest up afterwards. This is how it feels for me a lot of the time. I actually had my very long hair cut to shoulder-length to make it easier and quicker to wash. I have to rely on baths rather than showers to wash, and on dry shampoo to extend the time between hair washes! When I’m bad, my husband or mum will wash and dry my hair for me. #lifehacks
  • Cooking: I used to cook all of our evening meals, as my husband gets home a lot later than I do. I also used to be a keen baker, baking lots of cakes and cupcakes (hence the nickname!) This is something I can no longer do. My husband often cooks now, or we have to rely on ready meals (which I would never have eaten before). If I’m home alone during the day, I tend to snack on easy things like snack packs and fruit rather than preparing lunch, due to sheer exhaustion.
  • Sleep! I used to sleep really well. I would fall asleep quickly and sleep through the night, waking up fairly refreshed. Oh how I miss this! I now struggle to get to sleep, sometimes not falling asleep until 5am. This is usually due to how much pain I’m in. I take prescription painkillers but they often fail to relieve the pain. When I do fall asleep, I frequently wake up in the night, again due to the pain. I wake up feeling like I need another sleep to recover haha! My body clock has almost reversed, so it’s a struggle to ensure I wake up at a normal time each day.

Something I Wish People Knew

If there is one thing people learn from this article, I would love it to be this… ME is a strange, confusing illness. I can never predict how I will feel from one day to the next. It fluctuates and although I feel unwell overall, there are better and worse days. On my ‘better’ days, I generally still feel more unwell than most people ever have, but I try to make the most of them as they can be few and far between. This can lead to confusion from others. People often wonder how you can be up and about one day, when you claim not to have been able to get out of bed the day before.

After almost 2 years of this condition I have still failed to pinpoint what causes the bad days (apart from the obvious of overdoing it). If I knew, I would be avoiding it permanently! So I can’t explain to you why I’m okay today but may be housebound tomorrow. But please believe me when I say it is genuine. I am not ‘faking it’. There are absolutely NO benefits to having this illness and I would get rid of it in an instant if that was possible! So people being suspicious that I’m exaggerating or only choosing to do nice things is very hurtful. I missed Christmas last year, I missed a best friend’s first wedding dance and cake cutting, I have missed countless friends’ birthday nights out etc – so trust me, I am not picking and choosing! Sadly ME (and fibro in my case) just do what they want, when they want. I do everything I can to help, but it is still a very unpredictable and fluctuating condition.

Please learn to be open-minded. If you have a question that is confusing you about ME, ask the sufferer. They will be happy to explain things to you, and grateful that you asked rather than just being confused or suspicious!

How I Imagine my Future Without ME

The May Blog Bomb project asked us to consider how we picture our future if a cure was found or we recovered from ME (which is somewhat possible, although not common). I found this question quite easy, as I would definitely return to a lot of the things I enjoyed before getting ill.

My first move would be to re-join the gym and hit some Zumba and aerobics classes! I can’t tell you how much I miss the endorphins exercising released, not to mention the weight loss haha. Secondly I would get my skates back on and do some recreational skating.

I would 100% see more of my family and friends, as this is difficult when struggling with extreme fatigue. My family and friends have been amazingly understanding and supportive, so I would throw a big party to thank them and have a good old dance on the dance floor!

Although there are a lot of things I would like to do if I was better, I would also take some lessons I learnt along with me. I would schedule in some ‘down time’ and not constantly be racing from one activity to another like I used to. I have always been happy spending time alone but over the last few years, I have really learnt to enjoy my own company. I think it’s really healthy to spend some time alone every so often.

I have also made some amazing friends online from the ‘spoonie’ (chronic illness) community. Wow – these are some strong, kind, inspirational women! They are fighting a battle every day, just like I am, but they still have enough love and kindness to share around. I would definitely keep these friends even if I recovered. I am so thankful to have made them! I have also learnt how amazingly supportive and kind my existing friends and family can be – they have been nothing but understanding and I’m so grateful for them!

If you made it to the end of this post, then thank you for reading! I appreciate your time and hope you’ve learnt something useful.

If you wish to donate to an ME charity during awareness month, you can donate to Invest in ME here.

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12 thoughts on “ME Awareness Month: My Story – #May12BlogBomb

  1. Lacey Stritton says:

    Hey Katie, thank you for doing your part for M.E. awareness day. This was an incredibly well thought out and clear article, kudos for helping raise awareness about this dreaded disease. We launched a new advocacy group today for M.E. patients designed to increase research for the top mainstream studies examining M.E. I would recommend you come visit us and see what we have planned for the next few weeks 🙂

    • Katie Cupcake - Life with ME says:

      Thank you so much! Really kind of you to say. Sorry to hear you suffer from chronic illness too hun. I’m still pretty unwell over all and still can’t work, but a little better than early 2015. I think I’ve just learnt to cope with it all better! Xx

  2. lichensclerosis says:

    So sorry to read about your chronic illness. Have you researched or been tested for heavy metal toxins? This is the root cause of many illnesses (especially autoimmune). Please research this. Most regular MDs don’t having training to fully understand. Naturopathic doctors have a better understanding and can do effective detox protocol. Wishing you good health in the future.

  3. Holly Shannon says:

    I really enjoyed reading this, my boyfriend is currently under investigation for chronic fatigue and I can’t imagine how difficult it is for him.

    My wish for him, apart from a complete recovery, would be people not sharing their opinions about what they’ve read on the internet or “my aunt had ME for 20 years, then one day she was completely fine”. Well good for her but everyone is different!

    • Katie Cupcake - Life with ME says:

      Aww thank you for reading and commenting, I really appreciate it Holly! I’m so sorry to hear about your boyfriend. It is tough, but at least he’s got your support, which will really help! Haha, I know what you mean. I’ve had my fair share of ‘miracle cure’ stories and even people saying ME and fibro don’t exist!! xx

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