Tag: PEM

A Disaster of an Appointment

A Disaster of an Appointment

by SleepyBookworm94 ♥ 2 Comments

I think everyone who suffers with M.E or other chronic illnesses, experiences the frustration of not being ‘normal’ or wishing their illness would just give them a day off.  I experienced that feeling this week at a hospital appointment and I’ve never felt so defeated and fed up with my body. 

For the last year I’ve been undergoing medical tests for a heart problem, my heart seems to want to beat as fast as it can all the time, even when I’m resting.  It’s caused symptoms like; palpitations, chest pain, syncope, postural hypertension, sweating, dizziness and left me even more debilitated than usual.  Luckily, I started a heart medication this year which completely rid me of all symptoms and reduced my heart rate to normal.  However excessive activity still flares the symptoms up and the chest pain occurs periodically so I’m still having tests to rule out various conditions. 

This week I was sent for a cardiac exercise test which brought dread to my mind immediately.  Anyone with M.E will understand that dread because with M.E; exercise comes with consequences (post-exertional malaise).  There’s also that uncertainty that comes with M.E or any fluctuating condition; ‘will I be well enough to do it on the day?’.   I’ve never realised how quickly M.E can shift and completely wipe out the body until this test, and it wasn’t even the test itself that did it.  I arrived 45 minutes early to my appointment, it’s a large and busy hospital so I must factor in the time it will take for parking and for the distance and time It will take me to walk to the right department.  It’s normally fine, my Mum parks and we find the department with time to spare.  This week however, it was like the whole world had descended on that hospital and it was pure chaos.  The disabled parking lot was full and with a queue of cars waiting.  The main car park was so full that cars had taken to parking on grass verges and in completely obscure places.  The overspill carpark and drop off points were also all overrun.  The queue to park anywhere near that hospital was a mile long and every car was like a shark looking for its prey, every car for itself.  There were arguments over who was first for a space, people would drive like lunatics to beat someone else to an open spot.  I’ve never seen a scene like it, and as an anxiety sufferer, I was horrified by how selfishly and carelessly people will act when there’s not enough of something for everyone.  I was in that queue for 50 minutes, moving at a snail’s pace.  It got to ten minutes before my appointment, and I was still at least half an hour away from finding a parking spot.  When I rang the department to explain the situation and inform them I’d be late, I was told it didn’t matter if I was there 45 minutes early and stuck in a queue for 50 minutes; if I wasn’t there within 15 minutes my appointment would be cancelled.  That would mean an hour’s journey to the hospital and 50 minutes sat in a queue would be completely wasted, for something that was no way my fault, or within my control. 

I’ve always noticed that my anxiety levels can impact on me M.E; panic attacks are physically and mentally exhausting and, energy levels quickly become depleted.  Sitting in that queue for 50 minutes worrying and stressing; then being told my appointment would just be cancelled if I couldn’t park in time…. was completely draining.  At ten minutes past my appointment time, the nurse in charge of my test rang and gave me permission to park at the back of the staff carpark.  It was then a 15-20 minute mad rush to the department; I’ve never moved quicker.  The issue with that mad rush is that I arrived at the department sweating profusely and out of breath…to then begin an exercise test.  I was determined despite my M.E to complete that exercise test but I hadn’t anticipated an hour’s stress and anxiety before and a 15-minute run beforehand.  I got on that treadmill and as soon as it started, I felt like crying because I knew I wouldn’t manage it.  I’ve got short legs and it takes me twice the number of steps to match someone else’s stride; and that treadmill was fast.  I hadn’t expected to begin at jogging speed, and I knew at that moment I wasn’t going to last long.  I’d just run from the furthest carpark, through a busy hospital; after an hour’s stress and anxiety and, I was then expected to exercise for half an hour.  I managed 4 minutes on the treadmill before my blood pressure shot to 210/100 and I started to see black spots overtake my vision, at which point the test was stopped.  I’ve never felt more defeated and embarrassed.  I felt like I’d wasted the nurse’s time, my Mums time because she taken a day off work to take me.  I’ve never felt so upset and frustrated with my body.  It’s a horrible feeling to mentally want something but not physically be able to carry it out.  I felt completely useless, worthless, and deflated.  Despite the nurse trying to reassure me, I felt like such a waste of space in that moment.

That’s one of the worst things about having M.E; it can completely defeat you some days.  I’d started with the determination and energy to do that exercise test, and that energy was depleted before I even got to the treadmill.  I hate disappointing other people and taking up people’s time but there’s also that disappointment in myself and my own ability.  There’s also that fear of being judged as lazy or as somebody who hasn’t tried hard enough. Having to stop that test and admit defeat completely devastated me and my mental health.  That’s another challenging part about M.E, it’s often unpredictable.  M.E is a fluctuating condition, and it can be affected by the smallest triggers.  I might be able to walk for 30 minutes next week but on the day I needed that energy and ability, it wasn’t there.  Life with M.E is a life of uncertainty and that’s one of the hardest aspects of the illness for me.

Post-Exertional Malaise with M.E

Post-Exertional Malaise with M.E

by SleepyBookworm94 ♥ 0 Leave a Comment

Today I’m covering one of the most annoying and unfair symptoms of M.E: Post-Exertional Malaise (PEM). PEM was one of the first symptoms I experienced with M.E and a defining factor in my diagnosis. PEM refers to the worsening of symptoms after minimal exertion. In simple terms; it’s payback for activity.

PEM is a major symptom of M.E. If I exert myself, even minimally then in 12-24 hours I experience a huge increase in my symptom severity. I’m sure it can be different for everyone but in my experience; my fatigue overwhelms me, my body feels heavy and weak, to the point I can’t get out of bed. I experience noise and light sensitivity, my whole body aches and my joints become stiff and painful. I experience huge cognitive issues, my brain feels like it’s been wrapped in cotton wool and I find it hard to say what I mean, I become extremely forgetful and blank, I struggle to communicate or hold a conversation. My temperature doesn’t regulate and I can go from having hot flushes one minute to shivering with cold in the next. I become out of breath just walking a few feet and my legs can give way or become like jelly. A lot of people call it a ‘crash’ and that’s a good descriptor because it is like my body is breaking down and crashing into physical and mental exhaustion. This ‘crash’ usually happens to me about 12-24 hours after an activity and it can last a couple of days; or it can last all week. It’s really difficult to describe the feeling of a ‘crash’; it’s like my body has run out of energy completely, I feel debilitating exhaustion and fatigue. I have to fight to keep my eyes open because the fatigue is like a tidal wave that just drowns me and pulls me into sleep and unconsciousness. My whole body feels like it’s been battered and every muscle feels strained and achy, every joint is stiff and painful. It’s like being hit by a sudden flu that just flaws your body and shuts you down completely so that all you can do is rest and wait for it to be over.

A lot of people don’t understand how minimal activity can be, to trigger PEM. I could take a ten minute walk and 12 hours later, I’m unable to get out of bed. I could clean one room in my house and the next day; my pain levels are high enough to need opioids. I could spend a couple of hours socialising with a friend and then need to sleep for 18 hours straight. These are activities that normal people do without consideration, without thought; it’s easy and there are no drawbacks. I have to schedule activity, taking into account that 24 hours later, I might be unable to get out of bed. If I want to go out for coffee with a friend; then I have to leave the next 2 days free because I’ll be dealing with PEM. I have to space activity out so that I always have at least one rest day in between. PEM isn’t always predictable though, I frequently do activities I don’t think will trigger PEM and then the next day I’m stuck in bed wondering what happened. Other days I can do multiple activities in one day and then feel alright the next day; those are the cruel days because I hope that suddenly I’m cured and I don’t have this horrible neurological disease that punishes me for living my life.

One of the hardest things about PEM, especially in M.E is other people’s opinions. People think it’s an overreaction to leave days free for rest and recovery, people have told me to fight through the PEM and even to ignore it. The consequence of fighting through or resisting rest during PEM is a huge relapse in my condition. If I ignore my body’s need to rest and recover from minimal exertion then I cause a huge relapse in my M.E that can leave me bedbound for weeks or months. So it’s frustrating when people tell me to exercise more and be healthier by moving around more because I’m trying my hardest. Exercise is a huge trigger for my PEM, half an hour exercising means a day resting and recovering. Most people feel that ache and fatigue after going to the gym, multiply that by 10 and then you understand the effect of exercise on someone with M.E. I’m not being lazy, I wish I could go to the gym like I used to, I wish exercise was something I could just do without planning or payback. Yet people continue to tell me to exercise more, go for a walk everyday or do yoga or pilates because its just stretching. Graded Exercise Therapy is still something prescribed for patients with M.E despite research showing it to be harmful. I did Graded Exercise Therapy and it was one of the most depressing and damaging therapy I’ve ever done. I was made to feel lazy and guilty for not being able to do daily exercise, for not managing certain exercises because of the pain. I ended up being practically bedbound for a year because I listened to other people instead of my own body. That therapy made my illness unmanageable and eventually my body couldn’t cope and broke down; I spent 90% of my time stuck in bed, in pain, on medication and completely isolated and alone.

After that experience I learned that no matter how stupid it may seem to other people, resting after minimal activity is the only way my body can cope with day to day life. PEM is the cruellest symptom because it punishes you for doing things you love. I love walking in the country but I have to accept that if I want to do it then I might be in bed for 2 days after paying for it. I love my pets but I have to accept that an hour spent cleaning out the rat cage = the rest of the day in bed. I used to read for hours with no care for anything else but now I have to accept that if I spend too long reading then I’ll be too mentally exhausted to do anything tomorrow. It’s a difficult way to live and there are days when I don’t know why I continue on, why don’t I just give in and live my life from my bed? But I carry on and do the things I love because I am not my illness. Yes, I have a life-limiting illness but with balance and acceptance I can still live an enjoyable and worthwhile life.