The difference between my mitochondria and yours

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.

Let’s Talk: Discriminatory Job Adverts

Okay, this one has been coming for a while because subtly discriminative job adverts are an issue of mine and sometimes less subtly.

Why?

Because finding a job with a disability is hard enough and in the UK the Equality Act 2010 is meant to prevent disability discrimination in the workplace – from the application stage.

I’m not going to get into a debate about whether it does this well enough or not but I am going to discuss some of the parts of job adverts I’ve seen that are somewhat discriminatory.

  • We are looking for a high energy individual – My condition causes fatigue but it doesn’t mean I can’t do the job well.
  • Must be able to drive – If the job doesn’t require significant travel and is in a place accessible by public transport why do I need to be able to drive? There are many reasons why someone with a disability wouldn’t be able drive and this exempts you from the job even if driving isn’t necessary to perform the job well.
  • Must be able to lift X amount – If it’s an office role requiring mainly desk based work it would usually be a reasonable adjustment to delegate the lifting part of the role to another member of the team
  • Must be physically fit – unless it’s a role that actually requires this I think this one is self-explanatory
  • Good health record
  • Physically and mentally healthy
  • Flexible – flexible in what sense? How flexible? This may also be discriminatory to women who often have more childcare needs than men. Yes we may be flexible but only within certain parameters.

We need to work with employers to ensure these phrases don’t crop up in job advertisements, recruiters and disabled candidates are aware of the range of adjustments that may be considered reasonable and that recruiter are open to recruiting disabled candidates and understand that we can be valuable members of the workforce.

I hope that when the next generation start applying for jobs they won’t face these barriers.

Pacing is neither cure not effective management. It’s hard to perfect and to justify.

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.

Reviewing my Journey from one end of the country to the other during lockdown

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You probably think I’ve gone mad at this point or atleast run out of ideas – writing about my travels from one end of the country to the other. But I am, so such is life. And yes I have many other potential blog posts, I’m also thinking about starting a law blog to keep me occupied when I leave my job, unless I’m too busy trying to find a new job because internalised ableism is a bitch. I’m in a weird position with my health right now. Not really well enough to work full time. Unable to walk for 10 minutes without PEM and more than a few minutes without hip issues so would struggle to get to a workplace multiple days a week and work productively for 5 days without an electric wheelchair which I  can’t afford. I am looking into a self propelling one though just so when I move back in with the fam they can push me around. (They’re abelist selves will hate that)  Anyway that’s beside the point.

I had to go back to the end of the country where I work for flat inspections and to pace. Sounds weird that. But I do find my health is better up here as I don’t have the constant noise of my family draining my energy. I eat whatever and I don’t have stairs to contend with.

So where to start. I didn’t rate wearing a facemask, espcecially not an overcized one but it was all I had and it looked cute so I rate that. I feel like going out in things that previously would have faced so much negaitive judgement is easier if you can make the item pretty. The train station in my town was eerily empty but I was able to sit down whilst I waited for the train so can’t really complain. On the train it was only me and a family in the carriage until the end of the journey when a couple of other people got on.

Getting off of the train in London was a weird experience. Many people were wearing the face masks wrong, maybe the government should start sharing easy instructions on how to use a facemask properly. Maybe they already do and I just haven’t seen it. I popped into WHSmith because I didn’t feel browsing boots meal deals for too long was appropriate and I wasn’t that hungry so I just got a Lucozade, some hand sanitizer and mini eggs. I know it’s June. But Easter choc is the best choc.

I have never seen London  so quiet  and as usual the walk to the jubilee line killed me.  But it was nice seeing hand sanitizer points throughout the underground network. Unfortunately I had to stand on the tube as well as I felt too anxious to walk through people to get to seats at a social distance as getting there would break the social distance.

I’m so utterly pathetic. I felt really quite unwell and honestly that’s the worst part of being in London with an invisible disability. Heck even when it’s in some way visible it’s a good day if someone offers you a seat. Although social distancing issues aside I’m normally good at hunting down the last seat if I’m not travelling in rush hour.

I could sit on the second tube I got though and nearly zoned out and missed my stop. I am a liability on public transport. Honestly I’m amazed I’ve never actually missed my stop before.

I decided to sit in the sun for a bit at  as I had just under an hour until my train once I got to the next main national rail station which was really nice although sun makes me super nauseous right now! The train station handed out facemasks to people who didn’t have them which I highly rate as at the time of posting it is now compulsory to wear facemasks on public transport in the UK.

The toilets were open at the station which was great and there were hand sanitiser points outside the toilets which I highly rate and lots of reminders about maintaining a social distance.

The second train was more chilled than it ever is although I was very happy to get off and be back home. Made the very stupid mistake of walking back to my flat despite being in a lot of pain. I was so out of breath despite that 10 minute walk not usually making me out of breath even when carrying stuff so that’s a definite sign that my bodies not where it was at the beginning of the year.

Travelling during this time was a lot less scary than I expected it to be so I hope this helps those who are suddenly realising a need for public transport as the country opens back up after not needing it for a while.

When lockdown ends please don’t forget us (ME awareness day 2020)

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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.

The contradictions in ME/CFS recovery

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Full recovery from ME is possible but rare, but I believe most people over time can improve their level of functioning. It’s just often so hard because of these contradictions and because of access to the things that may help. (I.e supplements, being able to afford not to work or afford to work less, a safe family environment that doesn’t cause flares if unable to work and thus afford to live alone.)

When you have ME exercise is the worst thing you can do. Right? But even that’s not as clear cut. Some level of gentle movement is essential i.e  laying down yoga or even rolling over in bed and slowly doing more household tasks by yourself. And there comes a stage in ME recovery where exercise is actually a necessary part of building that function back up. No more cardio than a walk but when carefully managed it plays a role.

You need to simultaneously not do too much but not do too little. Yet not doing too much kind of means doing too little. Generally pacing for recovery means doing 50% less than you think your able.

You need to try and have a sleep schedule, a routine, despite this sometimes being impossible.

Do you eat super healthy knowing this can often involve significant preparation, money and chewing energy or not? Honestly I’ve eaten super healthy and super not healthy and been at similar levels of functioning. I definitely need to stop with the chocolate for aesthetic reasons right now (Okay no one needs to stop with anything, eat what you want but I’d feel better about myself if I consumed less.) but there are times that all I can stomach is junk food. Don’t ask why but my body will go through times where it digests ultra processed food better than whole foods.

Coffee or no coffee?

Prescribed medication that may increase fatigue or not?

Navigating ME is like a minefield and the stress itself can cause symptoms to get worse because stress takes energy that we simply don’t have. It’s hard to know what to do and get consumed in the process.

It can all get very complex. So before you think someone isn’t trying enough to be well, understand these complexities and that it is mostly trial and error. With very small margins for error as it could cause a permanent set back.

 

Living with chronic illness in lockdown

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Many have said that lockdown gives the normal healthy population a taste of what it’s like to be chronically ill. The constant missing of something and the loss of purpose is very similar to what happens when you get a chronic illness. Especially one that causes you to lose your job, lose friends and end up largely housebound.

You could say that us chronically ill folks have been equipped to the challenges of social isolation.

However, social isolation and lockdown can bring up it’s own challenges.

Suddenly the whole world is trying to get fit and make gains by working out at home. Trying to be productive whilst in lockdown.

Doing all the things we wish we could spend our days doing but can’t.

I wish I could bake more than a super simple no mess recipe without payback. I wish I could spend an entire day reading. I can read for 10-20 minutes without having to take a break and can’t sustain that throughout the day. I wish I could delve into a new series and binge it in a day. Actually watching it, following it. Instead of dozing throughout and having it on in the background.

I wish I could spend hours perfecting tiktok dances. Instead one attempt and my chest acts up for a good hour.

Without discussing the fact that atleast in the UK able bodied people can have one exercise session outdoors a day there are so many things able bodied people can do whilst remaining at home.

I can understand the anger of some people in the chronic illness community over able bodied moaning in this regard, because seeing and knowing everything that can be done from home leaves you with the feeling that your yet again missing out.

The rhetoric that we have to learn a new skill, start a business and get fit in lockdown can make us feel like we’re not good enough.

Let alone difficulties some of us have in finding food delivery slots. I’m lucky I have a little Tesco express opposite me. But I would be unable to walk 10 minutes to the nearest supermarket then queue up outside the supermarket and then do my shopping and carry it home right now due to the flare I’m in. That trip was always exhausting without the flare and the queue.

However lockdown has also done good things for people with chronic illnesses. Suddenly we’re feeling more included and more connected to people as the world switches to embracing virtual communication and forms of socialisation.

For some of us, our quality of life has improved because this social aspect has come back into play.  I myself am feeling relived that I don’t have to overextend myself to look like a normal 22 year old. There’s less FOMO and less having to say no or saying yes and paying the price.

The switch to having to work from home and school from home is hopefully going to make lasting changes that lead to the world being more accessible for those with chronic illness and allow us to reach our full potential and I’d  like to think that people are now going to be more understanding towards people with chronic illness. Once they realise that getting to stay at home all day isn’t “lucky”. One can hope for a positive change from all this right?

How are you finding this period of social distancing?

 

Trial and Error in Chronic Illness

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Living with chronic illness is hard for many a reason, one of these is the constant trial and error. Especially if you have one of those chronic illnesses that is poorly understood by the medical profession.

It’s trial and error with medications and with daily routines. What makes this trial and error so hard is that things change on a daily, if not hourly basis. Symptoms get better over time or get worse over time, and often fluctuate throughout the day. Symptoms can feel the same but your body may react completely differently to your actions on two separate occasions. Not only this but the trial and error of medications is mentally draining. Your body may finally settle down enough for you to start living your life again. You may think you’ve found your perfect cocktail of drugs and then you notice your symptoms increasing. You hope it’s just a flare but it gets worse. Suddenly your back and forth to the GP again, trying to find that perfect cocktail yet again. The potential side effects looming.

It takes time, it takes patience. There’s frustration. It’s exhausting.

Finding the perfect cocktail in the first place is exhausting, it’s frustrating and it is hard to go through without acquiring a mental breakdown.

Life with chronic illness is like going through the whole process again and again and again.

It’s like doing a science experiment on your own body.

However it also reminds you to never take anything for granted.

With a chronic illness you know your in it for the long haul. You know it could always get worse. You know symptoms you thought you’d said goodbye to could always come back.

The trial and error is exhausting, and it may make us snappy at times. But because of this we’re also very grateful people.

 

The one where my body forced me to slow down

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March has been such a month that I feel like there should be an entire blog post dedicated to it. I think I’ve hinted that I was previously running myself into the ground and March was the month my body said no.

It actually didn’t start horrifically and by that I mean the first couple of days of the month weren’t too bad. I onsighted all the things within my grade range on the autos up at the time. Even a 6b on the continuous overhang. And if you know me you know that the continuous overhang is hell! The pump is real but I stayed calm, focused on body positioning and somehow it happened.

The month then very quickly deteriorated. Both in terms of my health and my ability to climb. Although I did find ways around my bodies extra limitations and was climbing the same grades where it suited and could find a unique beta to compensate! Some things were also going on at work at the end of February which were negatively impacting on my mental health. I hated being in the office and believed by team hated me. I was over it by the second week of March but I do suspect the extra stress didn’t do me any good.

The month involved a lot of pretending I was okay through extreme dizziness and pressure in the back of my head. Through muscle weakness and balance issues. Through a non-existent level of concentration and decreased cognitive function. It took a toll on my work performance (although I will still largely hitting stats…) and meant I couldn’t project and step the climbing up a notch.

It also involved a lot of openly admitting that I wasn’t okay. Sitting on the mats, feeling incredibly dizzy and clearly not looking well. Openly admitting to my line manager and her manager that my ME is flaring and I wasn’t doing particularly great. I found I didn’t have the energy to get up early enough to put make up on anymore and if I did I felt so dizzy that I had to take mornings super slowly.

My mask well and truly gone.

I came 16th in a climbing competition, both in that round and on the overall. Topping 9 problems – which is more than I managed the previous month. I think the setting just suited me a lil better but maybe that’s a sign of actual progress. Had a great time with friends, adrenalined up because my façade is important. Not for other people but for myself.

For one night I was a normal 22 year old.

I got a grade 2 hamstring strain and did some damage to the ligaments in the back of my knee. Climbed with one leg 2 days later because both got too painful. Not for my pain tolarence but because I knew I was injured although at that point had not gone to get it checked out.

March might actually be the month I saw some sense. Yes my body forced me to stop. I was well and truly done. That first sick day and a half. I couldn’t sit through that endometriosis pain for another minute. I couldn’t sit through those ME symptoms for another minute.

But I also saw some sense. At some point something clicked and I was like no.

Health first. (I say this all the time then we swiftly give up)

I got my leg checked out after it hadn’t improved in four days. Something I wouldn’t normally do which is why I still have so many lasting injuries. I’ve had a back injury since the end of November.

I peaced out of the office at 9:30 one morning because my ME was not playing and used some sense by taking the next day off.

I expressed by concerns over the you know what situation and peaced out for a further 10 days.

Ironically I then got a suspected case of you know what that night. If that doesn’t describe ME in a nutshell I don’t know what does. My body finally saw a chance to rest and it got sick.

The last nearly two weeks have been spent trying to be productive and get what I need done, mainly from laying on the couch. They have also been spent unable to walk unaided, collapsing, passing out. Unable to cook, which fortunately for me I had sufficiently meal prepped minus a chilli I had to make. (By make I mean put beans in a pan, put sweetcorn in the pan, put the jar of sauce in a pan and bobs your uncle).

I have ordered pizzas because I’ve not been able to stomach the food I have nor go to a shop to get the food. There’s been lots of naps. Lots of being unable to nap but feeling too unwell to do anything. And I mean anything.

I’ve had many symptoms I’ve not had in a while and it’s been scary.

The world has changed and horrible as it sounds it’s nice to not feel inadequate because of my ME. It’s nice to not have to deal with the “I can’t say no” when I’m invited somewhere that would likely give me payback.

It’s nice to not have to try to be a normal functioning 22 year old yet still falling short.

God has definitely carried be through the times. I’ve got through being sick before. I can do it again, as long as I put the work in. Take the supplements I have, gentle movement, slowly getting more intense as I recover from this virus (I mean slowly). The church. In terms of the physical space doesn’t exist right now for many of us, if not all of us reading this. But we can still find ways to worship and feel gods presence. I’m going to join an online service at 6pm tonight. Can these online services last pls! Faith is how I stay grounded.

This month has been a weird one. For everyone. But we’re nearly through it. The weather is currently glorious, although I’m currently in a dressing gown with my electric blanket on and my heating on… It’s sunny. And hopefully as spring and summer come in there will be more sun to come!

That’s it from me. How’s March been for you?

 

 

 

This is ME

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I’m gonna use this time of self isolation to raise awareness for ME/CFS. This COVID-19 shit and especially the UK vulnerability criteria and how mine and my GP feel about it has made me realise how little people know about this illness. It’s kinda like the UK doesn’t care that we’re at risk of significant and serious relapse because we won’t die. GPs are also seeming to ignore what the ME association and Action for ME believe about the interaction between COVID-19 and ME/CFS. It’s not hard to google kids.

The sad thing is many GPs are not at all educated about this condition and there was a recent study showing some shocking statistics about what GPs believe about the illness and the people with the illness.  If even GPs believe we’re lazy, we need to exercise more and that it’s not a real illness then how are we supposed to get help and treatment? Now in my personal case it probably doesn’t help that I’m awful at advocating for myself and I never push to get what I want or tell the full story.

But telling the full story is hard. It’s hard to explain what’s wrong when in essence it sounds like everything is wrong.

My ME affects me in a myriad of ways. I get numbness, tingling and even burning in my feet and left hand. It leads to difficulty controlling my hands and my legs will oftentimes forget how to be legs.  I have seizure like shakes which hurt. It’s like a full on core workout. I can’t move throughout them and I can’t stop them. But I’m aware of them. I’m dizzy, even when laying down. I feel intense pressure in my head. Struggle to breath, get heart palpitations. Easy muscle fatiguability, I struggle to keep my eyes open. Nausea, Cognitive dysfunction and full body pain. I have a chronic sore throat and cough and often have a low grade cold. I’m sensitive to light, less so noise and smell but it does happen. My glands swell, my chest hurts. I have visual disturbances, most commonly in my left eye.

Yet I function, or atleast look like I function as the normal healthy adult. Yes I’ve had a lot of sick days lately. ME flares suck. Now I’m self isolating (by choice, sorry finances) and hilariously last night developed coronavirus symptoms. I was coughing more than usual and this morning I spiked a fever so absolutely no work until next friday! I get fevers a lot, and I don’t think it’s COVID-19 but can never be too careful in a global pandemic.

But for 6 years of ME, having never had a sick day from a job until 2 weeks ago is impressive.

What they don’t see is how much I have to push myself to do these things. How unwell I feel doing these things and the state of my flat. They don’t see how unwell I am when I wake up in the morning and the difficulties I have showering and washing/brushing my hair. The difficulties I have cooking or doing a form of exercise that isn’t climbing.

Yes I am well for someone with ME. I’m lucky right now… But it’s still significant. It’s still a significant daily battle with all of these symptoms at varying degrees. I’ve heard that most people with ME who can work full time only feel occasionally ill. I am not one of those people. I push and I fight, because there is nothing worse than feeling like a burden on the world and feeling misunderstood or feeling like your not enough.

There is progress being made in understanding this illness. It just hasn’t reached the mainstream yet and it needs to. We need proper education, proper research and as always more awareness.