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?
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.
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.
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.
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.
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!
As I’ve got a busy and stressful week I thought I’d make a quicker easier post and that is more brain fog stories as I have plenty of stupid brain fog moments.
Forgetting my brothers name. Not just confusing the two but going completely blank and having to settle for child and then getting told off by mum because “he has a name”. I know he has a name but my brain was so dead in that moment it couldn’t figure the name out.
Calling dad mum and vise versa – I did it twice in one evening a couple of weeks ago
How do I make a bowl of oats?
Completely misspelling words so they end up jumbles of letters
Writing the opposite of what you intended
Confusing words and names starting with similar letters
Leaving house keys in the front door
Forgetting to go to the toilet – yes I often wonder around wondering what I got up to do, go sit down again and then remember
Looking for ice packs in the kitchen draws instead of the freezer
Difficulty safely navigating streets and crossing roads when walking – my brain just struggles to process all the movement around me which is why I’ve not learnt to drive yet.
I hope these events show you the ridiculous things brain fog does to us multiple times a day and is somewhat relatable and helpful in helping everyone with brain fog feel less useless and alone!
These bingos have been floating around Instagram for years, they’ve only recently popped back up into the stories of those whom I follow. Maybe due to pandemic caused boredom.
I find these bingos problematic, on many counts. Both the physical health ones and the mental health ones. This isn’t an attack on anyone I’ve seen doing them or anyone creating them because I’m sure many people don’t realise the issues with them. It’s just a harmless piece of fun right? Maybe… to you. But there are some real issues associated with them that I’d like to discuss.
With both the physical and mental health bingos create some sort of sick competition as to whose the sickest. Who can score the most with symptoms, treatments and comorbidities. There has been this toxic competition going round certain parts of the spoonie community before and it’s simply not okay. A place that many come to for support and a sense of community. A place that many people come to in order to feel less alone. It’s supposed to be a safe space and not a source of ones own illness imposter syndrome.
This can be even more damaging with the mental health bingos. It’s already common with mental illnesses for people to believe they’re not sick enough for treatment. These bingos make that worse.
Mental health bingos can also be hugely triggering, especially eating disorder bingos which often give ideas for behaviours that can be used or use numbers.
It hurts my heart to see these in the recovery community, where someone’s followers are often highly vulnerable.
The thing with Instagram and especially stories is that it’s hard to avoid taking in this information. Unless someone puts a trigger warning on before doing the bingo and you can then choose to click off of the story.
I know how hard that is when we have limited energy and when we may not realise the trigger as it doesn’t trigger us. But if you want to engage in these bingos I believe it’s the safest way to do so.
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.
And we are in week I don’t even know of lockdown. But it’s fair to say the lack of meaningful human interaction is starting to take it’s toll. I’m an introvert but even us introverts will start to crack if left alone with our thoughts for too long. I’m lucky I have access to social media and people to talk to virtually but I’m definitely starting to feel more low than usual.
My sleep schedule is non existent
I’ve started having anorexic thoughts again. Sometimes some really intense ones that have been hard to not give into.
My brain fog is worse and my ability to concentrate also worse.
There are things other people can do, which would help like they’re daily outdoor exercise which I’m not yet really well enough to do. Daily. (Although getting there)
I feel this social experiment COVID-19 has played on us leads to two questions being asked.
Will we have the mental health services and resources to help everyone after this?
Is there going to be more awareness of the fact that poor mental health in people with chronic illness is oftentimes secondary as a result of the isolation it causes?