I have ME. When I say I have less energy than you I mean it at a cellular level.
My Mitochondria, that it the power house of the cell doesn’t do what yours does. It doesn’t produce energy the same way yours does.
You can get up, exercise for 2 hours, have a shower, work for a full day, some chores, walk the dog, read a book for fun all in one day,
That level of activity is something I dream about. To be able to sustain that without crashing and burning.
I lay on the floor to do some pilates based exercises and it drains me. So much so that getting off the floor is a struggle, if not impossible. My legs simply won’t.
You easily walk up the stairs. I walk slowly, clinging on to the banister. My legs feel weak and won’t move any faster even if I tried. Or I crawl. My legs not doing the stairs at all.
You can empty the dishwasher or hang the laundry quickly and without having to lie down after.
You go to bed and you wake up in the morning, maybe a bit groggy but you have a coffee and you can get on with the day.
I wake up in the morning, paralytically exhausted. Once I can move I’ll get up, have a coffee and a rest then try and get on with my day, fighting the need to nap for at least a couple of hours. My day is spaced out with intermittent rests and ice on the back of my head.
If you overdo it you feel quite tired so you take it easy and rest and you feel okay again.
I overdo it and my balance gets worse, I go into pre-syncope every time I stand up and may collapse just from trying to get to my own bathroom. My migraines get worse. My vision may get worse. My stomach may decide to stop digesting food. My legs, hands, feet and even face may go numb. My temperature regulation is worse than usual and my throat feels like like it’s being torn apart by razor blades. My light and noise sensitivity gets worse.
My body doesn’t produce energy in the same way yours does and it’s function is dependent on careful pacing, which is often better luck than judgement.
This week I went out in my manual wheelchair for the first time half being pushed because I live on streets with uneven pavements (which I’ve learn’t as long as the pavements straight but not if there are any bends!) and I still can’t get myself up a drop curb. I thought I’d write about some of the things I’ve learnt from the experience.
My arms are stronger than I thought they were. I knew my arms had better function than my legs. I trust them more and can feel them properly. But I genuinely thought I’d only manage self propelling 5 feet on a v flat easy surface before they just gave up.
Why can’t all pavements be level?
People were a lot nicer than I expected. I didn’t encounter any Karen’s on this trip.
Can people please put signs for COVID entry and exit sides at a wheelchair users eyeline before they have to choose a side of ribbon to go on.
Can we have counters at banks at a height that is more accessible?
Sometimes people do expect you to try and weave around them which is interesting as a new wheelchair user on a busy high-street. Was definitely scared I may run someone over at these points.
I didn’t feel like I was about to pass out or collapse as much, I could feel my legs and was much less grumpy and more chatty (so clearly it’s doing it’s job or atleast half the job)
The skin on my hands, my wrists and my shoulders surprisingly survived but there were deffo a couple of finger dislocations!
I somehow ended up with a bruise on the inside of my upper arm? (EDS skin)
I’ve come a long way in accepting myself since that time last year I had to be wheeled around A&E in a chair.
The advice a can give so far. The practicalities of navigating pavement in a manual wheelchair are a lot harder than you think and you have to go a lot slower than you think or even want to if the ground uneven (Maybe not for the seasoned manual wheelchair user). If you think you need to use a wheelchair you probably do need to and don’t let anyone tell you otherwise.
Pacing is what you are told to do with most chronic illnesses that cause fatigue. Pace your activities so you feel as well as possible, your condition stabilises and hopefully start to get better. With ME this is basically all we have and it’s not enough. Most of us don’t really get any education by our medical professionals on how to pace and some get dangerous advice. Pacing is a word open to much ambiguity. When should I stop? How much should I do? When should I rest? Although on one hand that’s positive because rigid timings kill all joy and cause a lot of stress and anxiety it’s hard to know whether you are just “being lazy” as people often confuse ME/CFS with or “scared of activity” leading you to test your limits on a better day/week just to prove otherwise…
Because ME has the hallmark characteristic of Post Exertional Malaise or Post Exertional Neurological Exhaustion which tends to hit between 24-72 hours after an activity but can be longer if you are just running on adrenaline which happens to me all too often.
Yes there are warnings signs as such. For example me not being able to feel my legs properly and feeling like I’m going to collapse but that doesn’t necessarily mean I’ll get PEM from that activity.
Then the PEM hits, increased head pain, facial pressure, back of head pressure, dizziness, brain fog ect. Sometimes I recover fairly quickly. Other times it can take a month to start getting better.
If you start feeling better you think you can do something or should be making use of that time.
It’s hard to rest on a good day just to prevent consequences. If you’ve been ill for a while you want to go out seize the day, make up for that time lost being in bed, barely able to function.
And even if you think your doing this successfully the PEM can still come on. Either because you overestimated yourself or just because pacing isn’t a perfect science nor is it all in our control.
We could get a virus, it could be that time of the month, have a bad nights sleep because someone decides to start drilling at 8pm and doesn’t stop till midnight or symptoms could keep us awake. A stressful situation could arise.
And we go backwards even if we were pacing perfectly.
Sometimes I just say “Fuck it” to pacing.
Either because I want to live my life or I feel pressured because people with other chronic illnesses seem to just be able to push through unbelievable things and I’m just not trying enough.
Now this never ends well. Although I can push cognitive activity without getting too much worse if I’m laying down I can’t with physical activity.
When you want something so much it’s hard to not give it your all. It’s hard to remind yourself that ME is different to other chronic illnesses in that doing too much has often disastrous consequences.
Pacing is hard and impossible to do perfectly. I’ve had people tell me I need to pace better in order to work not understanding that my level of illness makes pacing and being in the office 5 days a week impossible.
Don’t tell us we should pace. We already know that.
And if we aren’t pacing I can reassure you that it’s because we really really really want something or need something or because we just want to spend time with loved ones.
I made the decision the other day to get a wheelchair. It’s a decision I really should have made years ago but I was too scared and I could walk okay when I needed to…. so it was fine right? I mean not really but it’s hard to come to the realisation that you need a aid that many people see is only for people who are paralysed or otherwise literally cannot walk when you can. Adrenaline will keep you on your feet it just really hurts, the pressure in your head gets exponentially worse and it cases payback which limits your ability to do other things. It’s also hard to justify needing a wheelchair when you can climb. I don’t know why because climbing and walking are two completely different types of movement and your able to sit on the mats and rest inbetween.
It’s scary anticipating neighbours simultaneously seeing you walk to the car to go to your nans or the climbing wall or wherever else one goes in the car, but go out in the chair to go to town or the doctors or wherever once I have built up the ability to self propel I may go on my own.
There’s definitely a lot of people my parents included who don’t understand how chronic illnesses fluctuate. If I pace myself okay I can function and with my ME feel okay. Not healthy person okay but ME/CFS okay. Like the day I’m writing this. There’s some inner energy but the symptoms are still there. With my EDS yes my joints would be better if I could get myself more conditioned by climbing more but even then some days they are worse than others. Some days I can’t go into the freezer without partially dislocating a shoulder, others I can.
There’s also a lot of people who think people in wheelchairs somehow also have an intellectual disability – like we can’t speak for themselves.
And the awful “wheelchair bound” no for me it would be some freedom outside of the house with less payback and I know others feel that way.
It’s difficult navigating spaces that aren’t really made for us but it’s better than being stuck in the house.
And that. That would be amazing!
Does anyone else use a wheelchair for certain outings? What ableism have you faced?
This week is severe ME awareness week. I’ve never had severe ME and right now I would say I’m moderate – meaning I’m mostly housebound. I leave the house maybe once or twice a week for essential visits – i.e the doctor, the shops if I need to and that takes a lot out of me. I don’t work right now and when I was working from home it was brutal. But work like activities are done from a mixture of bed and desk, depending on the day and if I want to handwrite anything. So this is an outside perspective.
Severe ME is brutal and entirely distinguishable from the more mild forms. Some research even suggests that some people with ME will never get severe ME no matter how hard they try to push through but others are more predisposed to it.
Severe ME is being largely bedbound. It’s not fun. You may ask how people with severe ME spending all this time in bed. It’s not a lot of what you may expect. TV, books and work like activities. Instead it’s often laying in silence. Eye mask, ear defenders, a dark room. With nothing but your mind to keep you occupied. You can’t move and any movement feels like it’s draining you even further. You may have seizure like shakes, migraines, shooting pains throughout your body, numbness and pins and needles.
Even a shower or a visit from a friend or family member can give excruciating PENE (Post Exertional Neurological exhaustion) which lasts for a week.
You may need help to get to the bathroom or not be able to get to the bathroom at all.
In very severe ME you often need to be tube fed or reliant on TPN.
You have such a low activity threshold that just living can drain you further and cause deterioration. Especially if you aren’t in a quiet enough household or area. Or if your curtains don’t black out all light.
You may ask how you get severe ME. This is in one of two ways usually
1. You get a virus or another trigger and start out with severe ME
2. You push to hard – either on your own accord or all too often by pressure from doctors claiming you should push through the pain, or have inflexible graded exercise therapy. You listen because you too are ill informed about ME and you will try anything to get better.
Although some research suggests some people will never get severe ME and I think I’m in that category no one is “immune” as such and as a general rule of thumb pushing through your symptoms too much will result in deterioration.
This is a real biological illness and the most convincing examples of that are in severe ME. Lots of these patients aren’t depressed although I wouldn’t blame them if they were as it can be hard to maintain mental health with such a life limiting and misunderstood and often disrespected illness.
One doctor said to a friend “you get depressed and then you get deconditioned and end up bedbound”. Although for some this may be true this doesn’t reflect the majority of the ME population. You don’t end up bedbound because you decondition. You decondition because exertion worsens symptoms and sometimes it’s not even deconditioning. Your muscles just refuse to work at times. I’m there all too often. Waking up with paralytic exhaustion and often having drop attacks.
We need to help those with severe ME. Right now many of them are missing from the world, missing from medical care, missing from friends and family. We don’t know about the struggles they have and the help they need because many are too ill to advocate for it.
Sorry it’s been a bit radio silence here lately! I’m struggling with my ME and relying on adrenaline, caffeine, sugar and sheer necessity to get through everything I do. With feeling so god damn awful and trying to just carry on I thought I’d share some things I do because of my chronic illness.
1. Resting my head on the table or my knee whilst I handwritenotes or an exam – I started doing this at school when I was 10 and I always got told off for it. But it was just more comfortable like that. I didn’t know why at the time but as my symptoms have got worse I have realised it’s a thing I do to try and alleviate dizziness and head pressure and just keep going. Fun fact head on desk is how I got through my Land Law and Trusts Law exams.
2. Never having my feet on the floor and finding all manner of awkward positions to sit in so my feet are at hip height – helps with fatigue and dizziness and is just more comfortable.
3. Leaning against whatever there is to lean on
4. Constantly moving around if asked to sit/stand in one place – shifting weight and finding different positions helps with pain.
5. Working from bed or the sofa – I’m often dizzy and suffering from pressure in my head or I’m nauseous and in a lot of pain. My bed and the sofa both mean I can alternate sitting and laying.
6. Picking up my phone far too often when I’m meant to be working but my ME is causing severe head pressure and I just can’t concentrate – Really trying to cut the phone addiction. This doesn’t help I just am not good at sitting, or laying and blankly staring at what I’m meant to be doing.
7. Walking slowly – I’m sorry, I simply can’t keep up due to my pain and fatigue. Please be understanding if we are out together and walk at a pace I am able to manage on that day.
8. Grabbing hold of walls or using them to guide me I often get dizzy and go into pre-syncope. When my vision blurs due to this or I just feel unsteady on my feet I often use the walls to help me navigate my way to the bathroom or wherever in the house it is I’m going.
9. Taking my time when changing position (i.e laying to sitting and sitting to standing) – head pressure and dizziness is a bitch and it definitely gets worse when I change position.
These are just some of the things I do due to my symptoms that people may misread.
June feels like it’s flown by. I think that’s because I just haven’t stopped and if I have stopped it’s been because I’ve been so unwell that I’ve been unable to even watch TV.
June started with me with my family and ended with me back up north due to flat stuff. Moving out is not fun. But we move (Literally in 4 weeks from the day this will be posted). I definitely miss being home. Although my chronic illnesses are a lot worse and my family just don’t get it I’m finding it’s too quiet working from home on my own. I’m bored, not because I don’t have enough to do but because I need that stimulation of people (and dogs around). But the health benefits are certainly worth it. Lots of exciting law things happened this month. I got a video interview for my dream law firm (and then got rejected but we move).
I also got an interview for a scholarship I need which is at the end of July. The pressure is on because I need it but I’m excited. I also took part in Legal Cheeks virtual vacation scheme which helped me massively in determining what I want for career and in providing me with a network.
I really hope my luck in terms of interviews continues and I get some more interviews for my outstanding applications. If I don’t that’s also fine as I’m aware many firms have paused recruitment and it’s a difficult year. There is always next year.
My stomach eased up after I moved back to my apartment as it’s meant I can eat more flexibly and in a way that works for my body. My bladder on the other hand. I’ve spent the last week on antibiotics for a UTI that may or may not be there. It’s helped reduce the spasms but it’s still causing significant problems, especially if I dare drink more than one cup of coffee a day. I am at the moment whilst I’m trying to pursue law, trying to work my full time job and trying to sort out a job for August (I’m resigning it will be official by the time this is published).
My mum and nan are putting an awful lot of pressure on me about my decision. I’m leaving because I’m simply not well enough. I need to get my health back so although I’m looking for an ideally part time role my interest in something full time is limited to something of the dream job category. It will only be 5 months come resigning until I start my LPC so I reason if nothing I’m well enough for is available I will manage living with my parents and worst comes to worst just doing general CV bolstering activities.
There’s only so long you can push yourself for and although I am getting out of this ME flare, I think, Maybe that’s the adrenaline speaking, I need to place myself in the best position to excel in my LPC and go on to have a long career in law. I also need to recondition and doing that whilst working isn’t going well right now.
Passing out when trying to sit up after a laying down workout isn’t fun!
ME or Myalgic encephalomyelitis is also known as Chronic Fatigue Syndrome. It is an illness categorized by Post Exertional Neurological Exhaustion. This is a worsening of symptoms we already experience, such as dizziness, fatigue, pressure in the head and neck, migraines, difficulty speaking, brain fog, muscle weakness, widespread pain, numbness, temporary paralysis, nausea. noise and light sensitivity, full body shakes, sore throat and swollen glands. The list is never ending and it can be truly debilitating and overwhelming. This leaves many sufferers housebound of bed bound and only a small proportion can work full time.
That scares me especially. I’ve always known by working full time I’m doing too much and my ability to continue without deteriorating has depended upon sacrifices and careful pacing. Especially in this season where I have deteriorated significantly. I am stuck on the sofa, often reclined or in bed. If I leave the house just to pop to the shops which are in a close proximity to my flat I get PENE. Working a full day, even reclined feels so unbearable that words don’t even exist to describe it.
This means many of us with ME are already isolated. Even if we can work for many of us it’s from home and work often floors us so much that we may not have the energy to reply to your messages in a timely manner let alone have an outside social life.
We’re always in lockdown. We’re always socially distancing and in some ways this period of lockdown has opened the world up for us. People are checking in on us and zoom is a thing. The worry is that once people start being able to go out into their social bubbles and back into the workplace is that we will be forgotten once more.
Missing inside our homes.
Please remember to check in on us. I know it can be frustrating because we don’t always have the strength to reply or for a full on coherent conversation but we greatly appreciate your checking in on us.
And please consider spreading awareness on behalf of us. There is still a lot of misinformation out there.
Even doctors believe we are lazy, just anxious and depressed, that exercise is good for us.
None of these things are true.
ME is real and can oftentimes be more debilitating than Cancer, MS and heart disease.
April seemed to have gone by in a flash. It also seems to have been very sunny, not good for the migraines but good for the mental health when I’ve been able to get out.
Trust the UK to get it’s act together the year we’re in lockdown.
I’ve got to confess I’ve spent the majority of the month sleeping. My ME has taken a huge hit from months of overexerting and a possible COVID-19 infection which I still can’t fight off. I still have a cough. It seems to come in a cycle now though rather than being completely unrelenting. I’ll stop coughing for a couple of days then the cough will return. Under the UK guidance this means I don’t need to self isolate as I’d never actually stopped coughing so it’s not a new continuous cough and I did the initial self isolation when it started. However I am regularly checking my temperature and if I get a fever again I will, as that could be sign of reinfection. I’m also taking essential shopping to mean essential shopping. Not “oh I just want a bar of chocolate”. I have witnessed such interpretations of essential and trying to combine trips where reasonable in terms of my ME to try and limit contact to the outside world just in case.
It’s so much fun not knowing whether immunity is a thing to the novel virus right?
I have spent the month largely sofa bound but doing my best not to decondition anymore. There has been lots of bad migraines, lots of bad pain days, lots of fatigue and brain fog.
My activities have been somewhat limited but I think a lack of energy has stopped me from going crazy during this lockdown. I normally get very cabin feverish very quickly which is why I had never mastered the art of pacing. In the past I’d feel a little better and then I’d leave the house and end up bedbound again.
Now I’m feeling a little better and yes leaving the house when I need to but also thinking of things I can do in the house which are less likely to cause payback. I’m finally learning how to pace. I’m noticing early warning signs of a crash and trying to slow down straight away. Instead of pushing myself when every inch of my body is saying no. I’m still not perfect at it, there are still peaks and troughs in my ME. I’ve not perfected the art of pacing. But by remembering that I will actually have to work full time again soon, despite not being well enough I’ve allowed myself to slow down enough to slowly get out of this flare.
I’ve become addicted to tiktok, follow me @spoonielivingfree if you want some quality content. I’ve refound my love of writing. And not just my blog but I’m kind of working on a secret project and wanted to write fanfiction again. (The actual fanfiction writing has been non-existent tbh)
I’ve been able to dedicate time and energy to reading. Mainly YA fiction because it’s accessible to my foggy brain. I’ve been really enjoying getting lost in fiction again. It’s not really something I can do without PEM after work as my job is so cognitive.
Lots of chocolate has been eaten which isn’t great for my waistline but weight gain is okay!
It’s been a hard month and a socially distanced month and I really really miss my family and I am so ready to go home, although I don’t know when as when the office opens albeit in a socially distanced way I’ll have to be in some of the time. Hopefully not all as some would give me leeway to go home without the guilt of annual leave. I’m kind of contemplating illicitly going home myself once I get a work laptop, if I get a work laptop. Providing I have enough medication and the office isn’t opening imminently to my knowledge. Technically your allowed to move between households and if I went ideally it’d be for two weeks to limit what I may or may not be spreading.
But it’s not by any means be a bad month. Not every month that you get paid for not working a day. And in this age of adult responsibility and bills it’s not every month you get to make decisions to look after your health instead of running yourself into the ground.
Hilariously despite this entire month of time I’ve still not applied for PIP cause anxiety. Even tho I actually need to… I’m just not good at advocating for myself and I know I would be denied it because I don’t look sick… and a lot of people with ME are.
I am the queen of procrastination over anything that causes anxiety.