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.

August was a weird one

Photo by Maddi Bazzocco on Unsplash

Another month of 2020 done!

August was a weird one. I moved back in with my family which is a bizzare adjustment. They don’t really understand my illnesses or why I can climb but should be using my wheelchair to get into town and back (which I’m not proficient at self propelling on uneven streets quite yet so need someone with me to push when needed) and i’ve gained weight because people keep on baking, I eat dinner with the family and there isn’t much easily accessible healthy food in the house. Although It’s not much compounded with how bloated I have been it doesn’t feel good. As I’m getting healthier with pacing I’m contemplating trying keto but I’m still not feeling like I’ll be healthy to reliably make meals daily once my masters starts so…

Despite seemingly feeling healthier with pacing, I have had some bad weeks as a result of too much walking. I’m v good at overestimating my limits and maybe that’s because with chronic illness are limits can change like the wind. You don’t always realise the week long payback you’ll get from simply walking to the doctors and back and I’m noticing the deterioration in my joints more from having to carry heavier things and the climbing walls being open again. I’m trying to stay conditioned when I feel well enough but that’s rare with having to manage other things I need to do.

In August I got my wheelchair. I did yet another training contract video interview (and then got rejected), participated in a negotiation competition and got to the final 12 and did many other things.

However it was also a month of disappointment and feeling like I wasn’t good enough. I got let go from a voluntary position. And admittedly it’s better for me that way as I could never have fitted into the neat little box required and my ME and suspected ADHD means I can’t proofread well. It would have ended up being too much stress – working for someone who wouldn’t understand and is quite frankly not my sort of person.

Although it made me feel really low for a bit and still does when I think about it because it’s a literal failure. I know it’s for the best. I just wish I was given a second chance to prove myself.

I also have the feeling that my family really doesn’t support me for leaving my job, despite it being necessary for my health and to be able to pursue what I want from life.

But that’s life. It’s full of ups and downs.

First Time Out In The Wheelchair

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.

  1. 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.
  2. Why can’t all pavements be level?
  3. People were a lot nicer than I expected. I didn’t encounter any Karen’s on this trip.
  4. 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.
  5. Can we have counters at banks at a height that is more accessible?
  6. 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.
  7. 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)
  8. The skin on my hands, my wrists and my shoulders surprisingly survived but there were deffo a couple of finger dislocations!
  9. I somehow ended up with a bruise on the inside of my upper arm? (EDS skin)
  10. 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 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.

On Severe ME….

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.

Step into my shoes: Growing up with chronic illness

Imagine being eight, going through a phase of constantly spraining your ankles in PE, your teachers not believing your in pain when you ask to sit out half way through for the 3rd week in a row. That started it, the belief that no one believes you, everyone thinks your a fraud. There can’t be something that wrong because if there was people would believe you.

Being nine and spraining more ankles and a wrist. Being told you can’t go horse-riding because you have an injury, albeit minor. That started the feeling that you should hide the pain because you didn’t want to miss out on the fun. Horse-riding was a passion at the time and the pain wasn’t that bad. For pain that wasn’t always going to be there when you rode it was worth pushing through.

Imagine being 11, running around in the playground getting a pain in your lower right abdomen. A pain that unknown to you at the time would plague the rest of your life. You’re scared, but feel unable to open up to your parents about it. You reach 12 and it gets worse. Your dad somehow reads your texts and says your telling your friends you feel unwell for attention. You ask to sit out of PE because the pain is beyond excruciating your scared you’ll die. The teacher doesn’t believe you. You try to play basketball despite, standing out hand on your lower right abdomen, leaning against the wall whenever possible. Because that teacher didn’t believe you, you don’t go to the medical room in the next class. You think they to won’t believe you. You internalise it even more. Hide the symptoms from parents and teachers even more.

More and more goes wrong with your body. Dizziness. Going from once being fit to struggling to walk up the stairs to your English class without feeling like you’ll pass out. Your knees hurt and you stop horse-riding. Between the abdominal pain and the knee pain from having feet in the stirrups it’s just too much.

At 14 you take ibuprofen into school, taking it every three hours instead of every four. Even then the abdominal pain rarely eases up.

The teachers think you don’t try hard enough. You should be getting better grades. But how from the ages of 11-16 do you pay attention in class when you are scared for your health but feel you have no where to turn. When the nausea and abdominal pain is distracting at best and excruciating at worst. When you are depressed, self harming and develop anorexia because you feel like no one understands you. No one is there for you and no one listens to you.

Doing your best isn’t killing yourself. It’s not pushing yourself unreasonably. It’s simply doing your best.

Maybe I should have been getting straight A’s but my circumstances meant I didn’t.

At 16 you develop ME, but it comes on so subtly. You start getting worse at climbing, cycling two minutes down the road makes your legs feel heavy and weak when previously you could easily do the entire paper round. The sore throat comes on and it never leaves, you feel tired and start falling asleep at 2pm over the summer holidays or fall asleep at 8pm in the middle of watching criminal minds. You’ve been busy. It’s nothing. You start college, the nausea gets worse, you feel tired but everyone’s tired. It’s nothing. That is until the dizziness and heart palpitations start, the fatigue hitting you like a ton of bricks at the beginning of second year. (Although not as bad as I am now). The doctors don’t know what’s wrong. They record a sitting heart rate of 135bpm but say you are just underweight. Hilariously you then relapse into anorexia, fall into an exercise addiction and push through injuries. You feel the PEM (albeit mild compared to todays PEM it was significant at the time). The what is now known as ME gets better but your abdomen and all those organs decide not to be okay. You lose weight after gaining back to a healthy weight. In pain. Nauseous. Bloated The doctor says It’s just stress.

That’s just a snapshot of life with chronic illness. We really need to start believing our young people. Really making our young people aware that we are there to listen and help. Not just stick to the standard “faking it, growing pains, stress, weight” reasons for symptoms out of the ordinary. I know had I been believed and had I felt loved and able to speak about my symptoms from the outset I would be a more confident person now. I wouldn’t have spent so much time so scared, thinking about what could be wrong with me and maybe I then would have got better grades.

The month of both excitement and tears

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!

So that was June! How was the month for you?

On Sleep and Chronic Illness

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Sleep. What an interesting and topical topic. Seeing as sleep is essential for the functioning of the immune system and many people are struggling to sleep right now because of anxiety associated with the pandemic, I figured I should write about sleep and how to help with sleep as someone with chronic illness.

I feel like us spoonies struggle with sleep in two different ways. We either sleep too much (hypersomnia) or just cannot sleep (insomnia). Personally I struggle to stick to a normal 9-5 working sleeping pattern due to pain and nausea and because my ME seems to like the hours from 9pm onwards more and hates early morning rising. Many times I’ve gone into work on 4 hours sleep or less. I can easily sleep 10+ hours a night and have naps throughout the day when I’m in a flare. So I guess I go both ways…

Sleep is essential and not having enough of it can make it that much harder to get through the day or make us hyper tired and delerious and then crash later. So if your in the camp that is struggling to get to sleep at night or struggling to get to sleep early enough because your body clock is just against that 9-5 life then here’s a few tips.

  1. Have a wind down routine Although some people can just switch off and yeah I can sometimes, most people can’t. Be it having a hot bath, doing some yoga, reading a book, watching some TV or a combination of the above a wind down routine is essential for a good nights sleep.
  2.  Try to go to bed and get up at the same time every day. If you work I’m sure you’ll relate to not sleeping great on a Sunday night because you slept in over the weekend. Going to bed and getting up at the same time can have a demonstrable impact on your sleep.
  3. Sleep tea/night tea can help. I drink the Pukka brand of night tea.
  4. Don’t stress about not being able to get to sleep. For some it helps to get up and do something and for others it doesn’t.
  5. If you can,  spend your day somewhere other than your bed, and ideally your bedroom.
  6.  If you have night meds to take that may help you sleep take them in good time. This does two things, helps you fall asleep on time and means you feel less drowsy in the morning.
  7. I listen to podcasts/audio books to go to sleep, I find this helps occupy my brain whilst I’m trying to sleep.
  8. Putting lavender oil on your pillowcase is known to help with sleep
  9.  Try to limit your caffeine intake, especially past early afternoon!
  10. Finally, if you struggle with sleep because of pain try putting pillows under in-between different body parts (For example in-between your legs)

I hope this has proven helpful, there are many other tips and tricks floating around but I wanted to keep it to 10. What helps you sleep?

 

On ME flare ups, Pain flare ups and finding peace through them.

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I’m currently more ill than I’ve been in over a year. Both with pain relating to many a condition and fatigue. I’m feeling weak, my legs just don’t feel right on the ground and all of my will is going into stopping them from giving away.

I’m too dizzy to sit up and use my brain. Asleep more than I’m awake. My eyes stinging and burning. Either feeling really dry or constantly watering. I’m getting  daily migraines and the pressure in my head is oftentimes unbearable. Easily out of breath, from just going to the kitchen and getting some cereal. My extremities going numb as well as my legs.

My body alternates between high pain days and high fatigue days.

I know I need to take it easy to get out of it. But I can’t seem to get out of it. It’s been over three weeks since I started getting symptoms of COVID-19. The virus has pretty much gone but it was the final trigger for the flare that had been going on since the end of January. The flare that despite many a sick day I was only just coming out of.

Although I could rarely walk around my flat unaided when I had the virus. Whatever virus it was, and now I can which is a definite  improvement, I’m still sicker than I have been in over a year.

I’m used to pushing myself as a way of denying it to myself. Of climbing hard to ignore the illness, of showing up at work despite collapsing upon getting out of bed.

And I’ve now been blessed with a time where it’s easy to not. To try and listen to my body and rest. And that can take a lot! Emotionally and physically. It involves feeling all the fear, and sitting with it. Feeling that ounce of health returning and sitting with it. Not suddenly going for a run because you can sit up okay.

The ability to do little enough to get better from an ME flare requires strength. More strength than just pushing through the illness does. It involves coming to terms with the fact doing your best doesn’t mean running yourself to the ground. To the point that you have severe ME for life.

It involves dealing with whatever emotions come up with all the free time you have in which you can’t really do much. Even watch TV or read. I struggle to watch new TV shows and not easy to watch movies due to difficulty following them and can’t follow a book for much more than 10 minutes at a time. It can be quite scary.

Hence why I’ve traditionally boomed and busted unless I’ve had something more important like my degree to prioritise. (Which I did mostly from bed anyway…)

It takes a lot of strength to commit, to go all in. And you really need to find peace with the current you, regardless of your productivity or aesthetics. Or your ability to stay in touch with people.

As the years with this illness go on I’m getting better at that. And this pandemic and this flare has shown me how much better at it I am. At least whilst the world is at a standstill and people aren’t rushing as far ahead of me…

It’s not easy and it involves putting yourself first. Not just yourself now. But yourself in the future.

 

 

 

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?