Here we are again. The UK has entered a 4 week lockdown *touch wood*. Non essential shops are closed, restaurants, cafe’s, climbing walls.
Just as I was getting well enough to climb regularly again.
No I’m not impressed.
But it’s not the be all and end all. The schools are still open so I’m not stuck with my family all day every day, with no escape other than an “essential shop” or a walk that I don’t really have time or spoons for. I’m still finding walking quite difficult!
But seriously it’s given be a chance to work on my conditioning so I’m not constantly injured when the walls open again and hopefully I’ll be a better climber.
I can count on 2 hands the amount of times I’ve been climbing since lockdown 1.0, and lockdown 1.0 was characterised by a v sick han, collapsing multiple times a day just from walking around my old flat. Once I started feeling better and being able to stay on my feet I still wasn’t a well han. If I did climb I felt very unsafe. I often lost feeling in my legs and feet, being on the wall wasn’t an exception to this. Weak, dizzy, lots of pressure in the base of my skull. Like my whole body was about to shut down on me, and I felt like that a lot of time.
So as you can imagine I’m very deconditioned and don’t trust my legs. A chance to condition. When I can’t go anywhere else is actually quite helpful! I also might dedicate some time to baking and some ever so essential shops for supplies!
How is everyone in the UK feeling right now about 2.0? How is everyone else doing?
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.
Okay, this one has been coming for a while because subtly discriminative job adverts are an issue of mine and sometimes less subtly.
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.
I know Migraine awareness week was last week but lets face it every week should be awareness week so I thought the untimely post would still be a worthwhile one.
The classical migraine is an aura (usually some sort of visual disturbance) followed by a throbbing headache in one side of the head or the other (sometimes both) combined with nausea, vomiting and dizzyness. However migraines are a lot more dense and complex than this.
Personally I get a range of different types of migraines and symptoms from migraines/that end up causing migraines. Sometimes I get an aura which is either those spots of lights in your eye or a loss of peripheral or blurring of the entire vision in my left eye.
My migraines either come from neck issues and pressure at the base of the skull, over-exerting, not wearing my blue light glasses enough or hormones.
The hormonal ones are the most painful but normally they are just that. An agonising pain in the butt (or should I say head). These ones make me want to cut my head off. These migraines also come with the extreme light and sound sensitivity that often comes from migraines, along with that distracting at best and debilitating at worst nausea.
My day to day migraine however is a lot worse more varied irritatingly day to day and is often worse on days where the pressure in the back of my head is worse. If I am unable to manage that pressure before I get a migraine with ice, or laying flat on my back with my orthopedic pillow at regular intervals then it will often get worse and cause a migraine or bring on a worse one.
I get your regular nausea and vertigo like dizziness, but also some of my numbness and tingling may be attributed to migraines. Light sensitivity is a bitch, especially as I don’t have sunglasses that I’m confident in and it’s going into autumn and winter in the UK where people don’t wear sunglasses. I find I’m much more sensitive to sunlight than relatively small amounts of artificial light. There have been days/weeks/months where I haven’t been able to open my bedroom curtains fully. I struggle to watch movies on a screen without night mode on and without blue light glasses! Especially if it has lots of flashing, action or loud noises.
I’ll be fatigued but the symptoms will make sleeping almost impossible.
The symptoms cause unbelievably thick brain fog making every bit of cognitive function so much harder, if not impossible.
If I were to paint my pain I’d paint the pressure behind my eyes, the sharp headaches around them and the migraines above them. I would paint the back of my head, the pain and pressure from the base of my skull upwards. If I were to paint my pain I’d paint my jaw. Tiring from chewing and dislocating if I dare open it too far.
If I were to paint my pain I’d paint my neck as it gets increasingly sore, the longer I sit up. The grinding and pain that is more often arising from what I presume is “sleeping funny.”
I’d paint my collarbones. Especially my right one, which has been problematic since I ran into the side of a lorry.
I’d paint my shoulders. Struggling to carry a heavy backpack on my back, partially dislocating from trying to sleep or going into the freezer.
I’d paint my right elbow. The splintering pain I get through it from putting pressure on it or the ache from doing too many pushing movements.
I’d paint the burning, searing nerve pain in my lower arms. Tormenting me, keeping my up at night yet preventing me from doing anything useful. I’d paint my wrists, my fingers and thumbs. The instability causes pain but braces and constant taping is out of my budget.
I’d paint my chest. The period pain in my chest. The fibro pain. The subluxing ribs, sometimes just from sitting up.
My stomach. Not sure whether it’s hungry or nauseous. My kidneys, a pain beyond agonising that makes it hard to breathe.
I’d paint my lower abdomen riddled with all different types of pain arising from the urniary, gyne and gastro anatomy there.
I’d paint my back. The crushing feeling down my spine, the pain from my left SI joint and the agonizing ache in my lower back. I’d paint the nerve pain from my lower left back, right down to my lower left leg.
I’d paint my hips. Unstable, painful when I walk and climb. I’d paint my knees. Painful from doing to little yet subluxing from that spontaneous dance around my room or just standing up wrong. The ligiments in the back of my knee, tight and painful from past injury.
I’d paint my lower legs. The agonising nerve pain and bone pain. My ankles – unstable and easily damaged from impact and my toes – subluxing easily.
I’d paint my entire body. Chronic pain is relentless. It’s never ending and it’s difficult to explain. It’s real and physical pain.
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.
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?