I am going to start my first post for 2021 answering the question “Should you exercise with ME?”
I need to make my first point very clear, if you have Myalgic Encephalomyelitis or you are under investigation for ME then please DO NOT EXERCISE!
I will be using myself as a study on this as speaking my truth will hopefully help others who are wrestling with this mentally. I was diagnosed in December 2012 but I believe that I started experiencing ME related pain and exhaustion as far back as 2006. At this time I was doing a lot, Our Daughter was only 6 and I was also working full time, any Mum knows just how hard it is to raise a family at any age. Working bringing up a child, planning my wedding and working out to lose weight before the wedding all took its toll on me. I explained it away due to everything that was going on. On a family holiday to Florida the following year I started experiencing problems with my back which was leaving me unable to walk but when you are spending days walking around theme parks again it all had a viable explanation.
Over the next few years, I started getting medical issues which would floor me, the first big one was waking in the night feeling like I had been hit in the head with a baseball bat but discovering I had my wisdom teeth coming through again allowed an explanation. It was also around this time that I started experiencing far too much tiredness for me. I was someone who could go out for drinks with friends till 3/4 am and still get up for work the next morning. If we went out now instead of enjoying myself I wanted to be home earlier, I would spend my night chatting instead of dancing all night. Sundays would be spent vomiting up awful black stuff and sleeping the day away absolutely exhausted. I had nothing left to give anyone or anything, I thought I had just done too much and needed a break.
I made a big decision to change jobs which would potentially give me a very different work-life balance, it would allow me to go home from work and not think about work or planning for the next day, but any time away from work was now spent sleeping. Illnesses started affecting me more, the littlest things would leave me in so much pain and needing to rest. It was around this time that I started having recurrent laryngitis, I somehow knew that I needed to start taking note and involving my Dr, I knew I felt completely different but I couldn’t explain it away anymore. I had gone from being fit and well to too exhausted to walk up the stairs to my bed. Over time with the help of my Dr, we started running tests to exclude things as illnesses that affect your thyroid can also leave you exhausted. It was here that I found out I had Endometriosis, I finally felt like I had a real reason for the pain in my back and the exhaustion which was preventing me from walking.
Over time I went through some huge changes including being put into medical menopause but my Consultant. I felt so much relief, I finally had an explanation, I had the reason why I had so much pain all the time. I finally felt like I could give my body the break it deserved. I stopped working against the pain and exhaustion, knowing finally what it was. I could see the end to all of this, we finally had a medical reason for the pain and I now had a treatment plan in place, at last, we were able to manage all this pain with pain medication which helped for a little while. After giving my body time to heal I went back to work but I always felt like I was working against myself, any time I could I had to let my body rest completely, I would even go to the bathroom just to allow me to rest my upper body on my legs as even sitting up was proving too much. Surely this wasn’t right but I just felt if I gave myself more time it would all be ok. My Dr put it down to the medication but that didn’t feel right, this wasn’t just tiredness this felt so much more than being tired, this was another level.
My morning commute was 24 miles which does not feel long at all in a car when I got to work instead of being in half an hour early like normal, I spent that time sleeping as I just didn’t have the energy after the drive to put one foot in front of the other to walk the few steps into the office. My breaks would be spent asleep, even the hour I used to spend in the gym waiting for my Hubby to finish work I would now spend completely out of it on the back seat of my car. I started to spend more time away from work, I would allow my body to rest for weeks at a time but as soon as I felt like I was ok I would call work to tell them I would be back in that next day, after a few days I would be back at home exhausted again needing absolute rest for both my body and mind.
I was living in a completely quiet darkroom as sound or light hurt. I didn’t understand any of this anymore but I knew this wasn’t to do with my Endometriosis and I started doing my research. Seeing the page that talked about a potential link between ME and Endometriosis was like a light bulb moment, it was listing potential symptoms and I had every single one. I went in to see my Dr and just broke down crying, thankfully Dr Michael Merriman listened completely and agreed with me. That very day he started the referral to The Royal Liverpool Hospital and on that cold December day in 2012, I finally had the diagnosis of the illness that had changed my life forever.
I am completely confident that fighting against this illness for so long left me completely bedridden. If I had only listened to my body and the warning signs over the year I feel that I would have managed this illness instead of this illness managing me.
See anything you do while you have ME exudes energy which leaves you with PEM or post exertial malaise, no matter how big or small your exertion your body will feel pain/confusion or both. Maybe this is easier, if your friend who does not have ME takes a shower, they get out of the shower to dry off and feel fine. Yet if you take a shower with ME when you get out you may feel tired or confused anytime up to 72 hours later. All of this is probably explained best using the Spoon theory if your friend starts the day and they do not have ME they will have unlimited spoons to do what they want yet someone with ME starts the day with 10 spoons, each activity they do exudes energy or spoons. Taking a shower maybe 3 spoons, drying off another 2, then to prepare and eat lunch it could be 5 spoons. This means that after eating lunch and taking a shower which most people do without thinking about the consequences, for someone with ME that maybe the absolute most for them and some people start their day with fewer spoons dependent on how severe they suffer. To read more about the spoon theory click here Spoon Theory by Christine Miserandino
My days are now spent mostly in complete darkness with no sound at all. I have to wear dark sunglasses and noise-cancelling headphones when the noise outside gets too much for me. I need constant rest in complete silence and darkness for 95% of my life now. Any exertion will leave me out of it for days. I spend days out of each week not speaking to anyone as it is too much for me and I have real problems putting sentences together as I find it very difficult to recall the names of things. Being able to point to something helps but as I can’t do that on a phone call I avoid them completely.
I know that it is getting worse I see it every year based on things I was able to do in the previous twelve months compared to now. I have even had medical reports that state I will never recover from this, I’m only 43!
Do not follow my example please follow this advice and listen to your body. If you suspect that something isn’t quite right please start making some sort of log of evidence that you can give to your Dr or medical professional.
While looking on google can lead you to a dark place it was able to provide me with medical evidence of a link to my confirmed condition and a potential link to something that I was experiencing every symptom of. Being able to show that to my own Dr who had proof of my symptoms allowed a prompt diagnosis and treatment.
I have to stress that you know you more than anyone else so please don’t listen to anyone other than a professional or someone with actual helpful advice. I have had lots of my friend’s sister had such and such, all she did was x y z. The internet is full of people who know someone who had a miracle tip or plan so please be careful.
Being able to log the pain that I had over months was able to show me that my pain was always around the time I ovulated. My evidence showed that I needed a referral to Gynae instead of a general dept which believed I had IBS, I had this pain from the age of 17. My Dr at the time told me I had to take Gaviscon every day, if only I knew then what I know now.
Let me leave you with this advice, nobody knows you better than you do if someone shares an experience they have gone through please listen but remember that that truth is unique to them. Gather as much evidence and present it to your medical professional. However, if you don’t feel as though you are being listened to then change Dr, that is your right. You have to feel comfortable and confident in the person who is treating you.
More than anything listen to your body it will give you signs, unfortunately, I missed mine.
If you feel lonely and need someone to talk to then please get in touch using my social media links below or email me at ask@alishawhittam.com
You can also visit my website alishawhittam.com by clicking here https://alishawhittam.com/ as well as my shop at Shop with Alisha. I started my shop to help raise awareness of ME, I started by designing some Hoodies and I loved it, this has now grown to mugs, phone cases, Laptop cases and posters. As well as raising awareness of ME of Hoodies I also started with a few designs to show my love for my fur baby Alfie and my home city Liverpool. I would love for you to have a look as I am always designing new things, we have lots of new designs coming in 2021 👍
We also have groups on social media which I have also linked below
Friend with ME – Merseyside
ME Pyjama Party
Millions Missing Liverpool
Friends with ME
Thank you so much for taking the time to read this, as always your comments are welcome and I look forward to chatting soon on one of our social media pages, Love Always Alisha 🥰