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.

Lets Talk Migraines

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.

It’s not just a headache.

What’s your experience of migraines?

If I were to paint my pain

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.

The Things I do Because of my Chronic Illnesses That are Often Misread

Sorry it’s been a bit radio silence here lately! I’m struggling with my ME and relying on adrenaline, caffeine, sugar and sheer necessity to get through everything I do. With feeling so god damn awful and trying to just carry on I thought I’d share some things I do because of my chronic illness.

1. Resting my head on the table or my knee whilst I handwrite notes or an exam – I started doing this at school when I was 10 and I always got told off for it. But it was just more comfortable like that. I didn’t know why at the time but as my symptoms have got worse I have realised it’s a thing I do to try and alleviate dizziness and head pressure and just keep going. Fun fact head on desk is how I got through my Land Law and Trusts Law exams.

2. Never having my feet on the floor and finding all manner of awkward positions to sit in so my feet are at hip height – helps with fatigue and dizziness and is just more comfortable.

3. Leaning against whatever there is to lean on

4. Constantly moving around if asked to sit/stand in one place – shifting weight and finding different positions helps with pain.

5. Working from bed or the sofa – I’m often dizzy and suffering from pressure in my head or I’m nauseous and in a lot of pain. My bed and the sofa both mean I can alternate sitting and laying.

6. Picking up my phone far too often when I’m meant to be working but my ME is causing severe head pressure and I just can’t concentrate – Really trying to cut the phone addiction. This doesn’t help I just am not good at sitting, or laying and blankly staring at what I’m meant to be doing.

7. Walking slowly – I’m sorry, I simply can’t keep up due to my pain and fatigue. Please be understanding if we are out together and walk at a pace I am able to manage on that day.

8. Grabbing hold of walls or using them to guide me I often get dizzy and go into pre-syncope. When my vision blurs due to this or I just feel unsteady on my feet I often use the walls to help me navigate my way to the bathroom or wherever in the house it is I’m going.

9. Taking my time when changing position (i.e laying to sitting and sitting to standing) – head pressure and dizziness is a bitch and it definitely gets worse when I change position.

These are just some of the things I do due to my symptoms that people may misread.

What do you do because of your chronic illness?

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?

Fibromyaliga

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May 12th was fibromyalgia awareness day. May is also fibromyalgia awareness month so I thought I should write a lil something to raise awareness. Yes I have three chronic illnesses with the same awareness month.

Fibromyalgia is a widespread chronic pain condition which causes pain all over the body. This is generally nerve pain and is often sharp, electric shock like burning pain. I find mine can radiate around my body so much so that I am unsure what part hurts the worst. Or it will target a specific part of my body like my lower left leg and stay there, leaving me unable to walk normally.

Fibromyalgia often causes tender points and previously this was used as diagnosis. I don’t often get tender points, other than in my lower legs, not that I’ve noticed anyway and I’ve never had a full tenderpoint examination.  These tender points mean some sufferers find that they can’t bear their own clothes without causing more pain.  Although I don’t have tender points as such my sensitivity to pain has increased. I never used to feel blood tests or vaccinations and now “sharp scratch” feels like a lot more than a sharp scratch.

Fibromyalgia also causes morning stiffness and unlike ME/CFS which is a very similar illness can be managed through exercises. (Low impact exercise like swimming, Pilates, walking etc.) As I have both I find gentle movement and stretching can oftentimes help my pain, especially in the moment but there’s a danger of doing too much and then getting payback.

People with fibromyalgia often get migraines, suffer from IBS like symptoms, have numbness and pins and needles, fatigue, brain fog, TMJ, bladder issues, in females increased period pain. On that note there is a link between endometriosis and fibromyalgia, or atleast seems to be.

I know many women who have both and I myself am suspected to have both and a doctor has actually said to me before I got my fibro diagnosis that the increased widespread pain I was feeling was likely due to my body being in so much pain with gyne stuff for so long.

It causes insomnia, which for a fatigued population is really not fun. People without sleep issues probably think if we were lacking that much energy we could just sleep all day.

But fatigue and sleepiness are very different things and sometimes our symptoms are overwhelming that it is simply impossible to get to sleep.

It’s common for people to mistake it as a psychosomatic but although fibro can be triggered my emotional trauma it is not psychosomatic. We just don’t have a biomarker. It’s a diagnoses of exclusion although many people get fibro diagnoses and later find they actually had something else.

It’s also common for people to ignore the spectrum and think just because one person can do an active job we can all do active jobs or we can all work at all. This isn’t true. It’s so complex and varied, every person with fibro is different and some of us have access to effective pain control others of us don’t.

Ibuprofen and paracetamol may help some people but it does nothing for my symptoms. I take the maximum dose of gabapentin but also use heat ice, heat cream, freeze gel, spiky balls and self massages.

Pain management is a cocktail of things. It’s also very much trial and error. Managing the other symptoms can be even harder, with doctors often unable to provide useful treatments the cost often falls upon us to make often expensive lifestyle changes which will come to no surprise as often unaffordable, especially if relying on benefits.

Fibro has no rhyme or reason and is almost impossible to understand until you get it but I hope this has given you all some sort of insight.

The problem with Illness Bingos

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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.

 

Well that was a quick month

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.

How has April been for you?

 

 

 

 

Brain Fog

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Brain Fog is a symptom of ME, fibromyalgia and many other chronic illnesses. It involves your brain not working and can be one of the most debilitating symptoms of illness for some people. Today I thought I’d share some things that happen to me as a result of brain fog, when reading remember some of these things that they probably happen for healthy people occasionally but for those of us with chronic illness it’s not occasional. It’s often multiple times a day every day.

  • Going into a room, forgetting what I came into the room for, leaving the room then remembering and having to go back into the room.
  • Forgetting to pick up my card on the way out to the shops, only to get downstairs or half way down the road to realise.
  • Forgetting my train of thought
  • Forgetting what someone has just said to me
  • Wait, what day of the week is it?
  • What month is it again?
  • A lot of dyslexia like symptoms despite, as far as I know, not being dyslexic.
  • Not being able to process what I’m reading
  • Blowing on cold food….
  • Not being able to find the words to say to respond to someone and converse
  •  Just not being able to speak
  • How do I math?
  • Making really stupid mistakes when trying to learn spanish
  • Have I taken my meds yet?
  • Almost taking night meds instead of morning meds
  • Forgetting to take meds then wondering why I feel unwell

I’m sure there are many other ways brain fog affects me. What does brain fog do to you?