Many people think that M.E. is about ‘just feeling extra tired’ but the reality it that the fatigue with M.E. goes way beyond feeling tired. Also fatigue isn’t the most prominent symptom of M.E.; most people with M.E. find Post Exertion Malaise to be the more problematic symptom. (Among many other symptoms.)
Exertion does just come from doing physical activities, it could include exertion from cognitive activities other things too. Things like talking, reading, writing part of a blog post or pen pal letter, listening to an audiobook, watching a TV program, doing some crafting etc. Other extortions that can trigger it are sensory like light, especially artificial light I personally find, sound or even spending too much time sat upright.
Here is an example…
An example of an exertion I find incredibly difficult and try to limit to only when essentially needed is hospital appointments. Most of my appointments are done of the phone and just the talking is often very exhausting. Going in person to a hospital appointment is a whole other thing.
I have to schedule my appointments to be at a time when my PA is able to take me as I’m unable to take myself. I could use patient transport but it’s not time specific plus so I get to and from my appointment much quicker with my PA. Plus I need my PA to be there with me in case I become unwell like times I’ve had seizures and my PA is able to deal with them saving me a trip to the Emergency Department. (The exertion often triggers my seizures too).
I find the noise and artificial lights in the hospital challenging on my energy levels and the anxiety adds to my fatigue too.
Then there is the appointment itself having to listen to the doctor and take in what they are saying to me as well as taking back to the doctor answering their questions that uses up my cognitive energy.
Then I might be sent for tests. The doctor might want me to have bloods taken or for me to have an ECG. I’ll try to request these to be done at home rather than and there after my appointment. I’ll also have to go to reception and book my next appointment and request this as a telephone unless I need to be seen again in person for another appointment or procedure.
My wheelchair helps make things less exhausting plus I’ll always have a seat to sit down on. - Hospitals just never seem to have enough blue badge spaces or even parking spaces full stop. It’s quite easy to glide around once I’m in the hospital.
Then my PA has to get me and my wheelchair home. I’m usually feeling crashed so I’ll settle in bed as soon as I get home.
After all that exertion and now I’m extremely fatigued and will be feeling crashed out and will experience Post Exertion Malaise as a result. This could last days, a week or even weeks and to what severity I don’t know.
Sometimes the when I get PEM the cause feels worth it, like spending time with my Dad, other times it feels a frustration and not worth the PEM especially as PEM makes me feel so awful.
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| What exhaustion feels like |
The reality of exhaustion and PEM
I feel exhausted all the time. I wake up feeling exhausted like I haven’t slept. Sometimes I have insomnia because I’m too tired to sleep. It’s like I have a weighted blanket over me and everything goes in slow motion and I can’t focus because of the brain fog.
It then makes doing tasks difficult as I start the task feeling exhausted so I easily over-exert myself.
I feel like I’m in a perpetual cycle of PEM and exhaustion as once I’m over the PEM of exerting myself over doing one thing it’s not long before I’m exerting myself over something else causing exhaustion and myself to experience PEM again.
Initially I’ll feel the payback and crash, which will turn into PEM. I won’t know severe my symptoms will be (so what extra care I’ll need), how severe my symptoms will become or how long the crash and PEM will last for.
With exertion it’s like walking on a tightrope to not overdo it. The smallest amount of doing too much will push my body over the edge and cause me to develop PEM. Even simple things like speeding too much time reading or writing a letter to a friend, holding a telephone or zoom appointment for an hour, or sitting upright for too long on some days can tip me over the edge. Forget going out the house and the great deal of PEM that causes me.
I try to pace myself; not ‘boom and bust’. Have regular rest periods, traffic light system my to do list etc. I try to do all the right things to try and lessen to PEM and payback. It really is so hard to navigate doing this on my own and now I’m under an M.E. Service I hope they can help me not to ‘boom and bust’ so much and reduce my PEM and constant feelings of exhaustion.
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What I’m like when I’m experiencing exhaustion and PEM
At my very worst I can be unable to move or speak. I cannot tolerate light or sound (so I’m unable to listen to my audiobook for company), I struggle with strong scents like perfume and I struggle being touched. Even the movement of my air mattress can be difficult to tolerate. Even carers banging my bed can be painful. Sudden sounds like my carers phone getting an alert are also hard to tolerate. All personal care has to be done by my carer and I need assistance with drinking and eating. I do find my hydrate bottle helpful as I can drink hands free. It’s also difficult as I have to wait for my carer to arrive to give me pain relief.
Usually however I am able to move and get myself comfortable in bed. I may be able to get pain relief but sometimes I still have to wait for a carer to do it for me, so that’s something that varies. I can talk but voices have to be get at a low volume and conversation is kept it a minimum. I am able to listen to my audiobook or a podcast for company; I prefer to listen on my noise cancelling headphones (I do this normally anyway). Television programs or YouTube videos are usually something I find too sensory overwhelming so can’t tolerate this type of entertainment. I usually have soft low lighting on in my bedroom and keep it to a minimum. Things like fairy lights or my mushroom lamp. Sudden sounds are still difficult. I still need full help with my personal care so I don’t tire myself out. I can usually manage drinks independently. I might need help eating, I’ll still stick to soft food that is easier to eat and I’ll have my food cut up small so I can just eat with my adaptive spoon. I still find my hydrate bottle really helpful as it means I don’t have to lift heavy bottles.
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What are some of my symptoms?
For me M.E. is a neuro-immune illness so when I’m more unwell my immune system flares-up and I experience flu-like symptoms.
I also find my body is harder to co-ordinate and my arms and legs feel like they have weights on them. My muscles are also weaker and my muscles tremor more too. I’m also more unsteady and I have more falls and I find it harder to transfer into my wheelchair. - This is where having my new wheelchair is helpful. It’s lightweight so easy to move around in and I use it around my home when I’m able to get out of bed.
I get overwhelmingly fatigued to the point where I can’t focus my brain or my eyes and I feel drunk.
My PoTS and Orthostatic Intolerance worsens so I’m more dizzy and lightheaded and I have to lay down more and tilt my bed. My heart rate is higher even and my blood pressure lower even when resting. I’m more at risk of passing out too.
I find when I’m tired I’m more cold even when the weather is nice outside.
Brain fog is a big symptom for me. My cognitive function is really affected I get easily confused and forgetful. It’s like my mind is puzzle pieces that I can’t fit together, that’s what brain fog feels like. Another way to describe it is like trying to move through sinking sand. I struggle to focus my eyes too sometimes.
Like I put above sometimes I’m unable to speak. Other more commonly my speech will becomes slurred, or have difficulty finding words. I often sound drunk when I’m very exhausted. I’ll often use the BSL signs to aid my communication when I’m around people who understand my BSL/SSE and I use communication cards too.
My sleep will also be affected too. Despite the debilitating fatigue during the day at night I’ll struggle with insomnia. I did a group session on sleep for people with chronic pain that was helpful and I hope the M.E. Service can help with this. Currently I put my insomnia down to not having the energy to sleep, but that’s just my guesswork but insomnia is common in people with M.E.
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So as you can see there is a lot more to fatigue and exhaustion than ‘just feeling tired’ and what PEM is like. Fatigue, exhaustion and PEM can be so debilitating and the hardest aspect I find is the unpredictability with it. Not knowing when I’ll get these symptoms as one moment I can be relatively okay and then a JCB truck can dump a load of exhaustion on me and I can struggle to function. Or I can do something and then I’m hit with PEM that I have no idea how long it will hang around for until I’m back to my usual self. Or after severe long periods I’m left wondering ‘is this my new normal now?’ It’s so incredibly isolating too especially when I don’t know what the right thing or the wrong thing is to do. So let’s just hope for this M.E. Service and they can offer me some advice and guidance and hopefully some things to lessen the severity of my PEM sometimes. I’m even hoping there will be a group session where I can meet others with M.E. too.
