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.

Trial and Error in Chronic Illness

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

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

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

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

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

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

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

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

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

 

Why I climb and will continue to do so even if I can no longer work full time

 

I feel like this is round 2 of “if your well enough to do x then you can work.” But god am I angry and upset and generally don’t like my job and no ones even done anything major yet. Also haven’t been off sick despite severe pain because god forbid people see me have a life.

I’m in a really bad pain flare this week. Endo = fibro going haywire and later on will lead to HSD going haywire. I’m also normal person sick which doesn’t help matters and incredibly busy! (Doing things I enjoy and want to do but still.)

So I guess it doesn’t take a lot to piss me off and make me feel out of sorts. Functioning at a v high level I.e being out of the house other than to sleep with 8/10 endo pain is fucking hard and yes makes me easily irritated with peoples ignorance to the realities of living with multiple chronic illnesses.

I once said to my friend that if I got signed off sick I would climb every day and okay. Maybe not every day cause bodies need breaks and only if i wasn’t signed off sick cause I had to have a surgery or something. But near enough. I stand by that and this post will tell you why.

A) I have HSD and H-EDS has been thrown around a few times. One way to combat these illnesses or atleast that part that causes joint dislocations is to be hyper strong. Our tendons are under more stress than the average human because our joints hyperextend. Building muscles helps prevent injury and pain. In addition to this we also seem to start to decondition  quicker. Meaning. I need to climb. Climbing is the only exercise I can do that doesn’t make my ME worse and the only exercise that relives that awful brain swelling feeling that causes so much dizziness. Don’t ask me why don’t ask me how. But it is. Even gentle Pilates will leave me stuck on the bedroom floor. Climbing is my physio. It’s my road to recovery.

B) My mental wellbeing is also important. Climbing makes me happy. It makes life worth living. It pushes me to be accountable to myself. Makes me better at taking my supplements, try  to get adequate rest and eat a better diet. All of these things are hella expensive and take a lot of commitment. I would much rather spend my money on fun but this is the reality and when I climb, I remember how far I’ve come and that I need to do my best to balance everything. Tagged onto this is I need to see people. Life with a chronic illness is incredibly isolating. My gym is very social I love it. It is almost impossible to go through a climbing session without speaking to someone. My view to health is that your physical wellbeing affects your mental wellbeing and vice versa. If you want a healthy happy Hannah she needs to climb.

C) There is a big difference between working 8 hours a day and having a short sesh at the gym or a chill social sesh where you spend more time laying or sitting on the mats than climbing. This is especially true considering the different types of energy. Yes climbing is cognitive but not in the same way as reading and analysing information for 8 hours a day. It can be so easy to be quick to judge as to whether someone is faking or not. I know, I too have been guilty of this in the past. Not necessarily faking but just picking and choosing.

I urge everyone to be more mindful and maybe think a little more before judging. It can be hard to see something from the disabled persons side even if your disabled because we’re all so unique but try and if you need to ask questions, ask ahead.

 

The only one your competing against is yourself

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This blog should be retitled “lessons learnt from climbing.” Okay but seriously, I thought this title was apt for the post that I’m going to make.

Comparison is the thief of joy. I say this a lot and I really mean it. I know that a lot of us with a history of anxiety, depression and eating disorders will compare ourselves a lot. A literal common trait amongst anorexic is a toxic desire to be the best. This means that even once we’ve recovered – we will compare ourselves and beat ourselves up and push ourselves to dangerous extremes in different aspects of our lives. I literally ended up largely bed bound because I was trying to be everything I thought I should be at uni and then sacrificed all but my degree.

I spent 2019 really trying to find that balance and yes I still studied mad hours, and sacrificed all else because there wasn’t really much else I could do and yes I graduated top of my class. But it was worth it. It was so, so so worth it. I was trying to be the best law student that I could possibly be without causing my health to deteriorate and I made it. But even then, even when I had the right motivations I still had those “x is going to write a better diss than me” breakdowns.

I’m here to say that it doesn’t matter if x writes a better diss than you or is a better climber than you or does that problem and you can’t or consistently gets more stats at work than you. None of that matters.

Since graduating I’ve really found my balance some more. I’ve accepted that some days you win and others you lose. I’ve learnt that pushing myself to relentlessly fill out training contract applications day in day out is not the method to success in life. I have also realised that I have many years to be successful in whatever career that may be and there is no rush!

Just because X seemingly is better than something than you or gets more legal work experience or wins climbing competitions or gets a training contract before you or wins some nomination at work it doesn’t mean your not enough.

Yes you may feel your talents go unnoticed sometimes or that you have none because they go unnoticed. And that’s really sad, I’ve been there. You do have talents even if you feel like no one notices them.

What I’ve learnt and slowly come to realise is that there is no point comparing yourself to x. Yes you may take useful tips from x but it is important to remember that we are all different and we all have different priorities in life. We also all have different journeys in life.

And that is okay!

We can’t all be the best at everything and wouldn’t the world be boring if we all were.
This year I’m testing out the climbing competition waters again. Now I may have wimped out of the first round of my walls winter bouldering league even though there were problems set from absolute beginner upwards but after looking at the problems and climbing a few of them I realised there was no reason for me to wimp out. Maybe I would have come last but who cares? It’s about learning and developing. I have registered for paraclimbing nationals because what better time to try and make that teenage dream come true.

I know I’m not strong enough, good enough at route reading this year to win or even make finals. But I think that’s the beauty of it. It’s about learning to climb in that environment again and learning to train hard but not too hard. It’s about meeting people, pursuing my passion and being the best climber I can be.

The only person your competing against is yourself. We all have our own life journeys and climbing journeys alike. We all have our own strengths, weaknesses and experiences. I’ve learnt to enjoy the small signs of progression and am slowly learning not to feel disheartened if progression doesn’t feel fast enough or I feel like I’m having a bad session or that I’m the worst.

I can’t train hard every session with my conditions and that’s okay. Technique based sessions are also important as well as social sessions.

This 2020 I’m making a vow to myself. To not compare. To not beat myself up for not being the best. I am me and that is enough.

When I say I’m tired…

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This is a difficult one to write but an important one in order to raise awareness for fatigue causing chronic and mental illnesses as your average muggle just does not understand what we mean when we say that we’re tired.

Let’s just start by getting our understanding of tiredness correct. Tiredness can be relived by sleep, rest or even a coffee. Tiredness may even be relieved by a cold shower in the morning or a nice morning run (or climb).

When I say I’m tired that’s not what I mean.

I mean I’m dizzy. My brain is just not doing anything for me, and I struggle to understand the simplest of things.

I mean that I’m getting an intense pressure in the back of my head and neck and that is making me dizzy. I am struggling to stay sitting up. Let alone using my brain and working or engaging in a conversation.

I mean I have a debilitating headache or I’m just getting sensory overload for no apparent reason so please shut the fuck up.

I mean that I am in so much pain that no amount of distraction is helping. I need to either go for a climb or just lay in bed with whatever heat/ice combination and some reruns of greys anatomy.

I’m not just tired I’m exhausted. My muscles feel week and heavy. I’m struggling to coordinate myself, I can’t feel my legs. I’m having random muscle twitches and seizure like shakes.

When I say I’m tired, I mean I’m so tired that even if I lie down I feel like I’m about to fall. I can’t tolerate using a pillow. I can be completely flat and still feel like I need to be laying down more.

I don’t just mean I’m tired.

I mean my body is done and it needs a break.

What do you mean when you say your tired?

On climbing and chronic illnesses

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I’m not sure if this is going to be a little bonus post this week or my first post of 2020. But I feel inspired so I’m gonna write it.

I’ve been climbing since I was 14 and at my peak I could do a 6c+ (font) which is a V5? Anyway I started as a top rope climber and did some regional competitions as well as a bit of leading before moving exclusively to bouldering in 2016. This was a big move because bouldering was my nemesis before hand because it was scary and I found equivalent grades felt impossible. It was also my first introduction to really steep terrain, which still to this day I am hopeless at although definitely improving. However, I also found something in it which was so rewarding. See I like a challenge. I also found it calming. A break from the stress of A-levels – which at the point I was behind on due to ME. And slowly but surely I got up to my peak bouldering grade being a V5.

Then life happened. I had a really horrendous endometriosis flare up which caused an ME/CFS relapse (doctors have actually said this) so I barley climbed for a year. Tried to get back into the sport at the beginning of my second year at university and I could still boulder a V3 with relatively little effort. I then ended up largely bedbound for two years and here we are now.

I have been climbing properly again for a month. Bouldering exclusively although once I get my stamina up and I have some more money I’ll go down to the local awesome walls and get myself on some autobelays to test out my stamina and maybe push the grades but we shall see. I’ve said in my previous post that I’m climbing at V1-V3 level – with V3 being my peak/if it suits me, I can probably do it. Since coming back I’ve had to focus a lot more on technique because I have no strength. Yet I’ve got myself up overhangs. I’ve worked and I’ve worked, and I’ve worked some more.

Not just on specific problems or techniques but also on thoughts towards myself. I’m something of a perfectionist. I am also someone who struggles with not being the best at everything. Now I was never the best at bouldering but not the point. Coming back means that I am very much the worst. Or not the worst but not great. I have had to accept that, and not beat myself up over it. We all have our own journeys and my journey is a comeback. A journey to hopefully coming back better. I know I lacked some technique, some old pictures of me make me cringe. It’s about building on that – growing and hopefully becoming physically stronger as well. I always say comparison is the thief of joy and slowly but surely, I am learning to not beat myself up because x can do that blue easy and I can’t even start. And that’s the same with everything. There’s a lot of potential comparison in life – with grades, with stats, with weight. And with a chronic illness it’s hard to believe you are enough and you are valid. But you are. If you know you’re trying your best then you are enough. (And that doesn’t mean killing yourself trying. It means listening to your body)

Since bouldering again – well today actually. I realised, and all the cogs in my brain finally clicked, that I can tell how my body is doing. Yes, I have climbed through extreme pain but it’s about knowing what and why. Is it likely to cause an injury or a flare up that just doesn’t make it worth it or not? With bouldering I am slowly learning when to push and when to not. Or I hope so! Today (well won’t be when this is uploaded) I had a not so great session. I didn’t see at much progression as I have been over the last few weeks and my body was struggling because HSD was interfering with my elbows meaning slots of slabs were out and ME/POTS were causing my legs to feel incredibly weak and me to question my hands ability to grip. I could feel that, and I knew. So instead of pushing it too much and stress I decided to see what I can do. I got up two V1s (allegedly) that are so not my style and I had been trying to do for weeks. I got up a V2/3 that I have been trying since last week and it was such a shock because although I had attempted to route read the whole thing at some point, when I did it I was so focused on this one move that I was struggling with that I kind of figured out the rest on the spot. I also did a V2 on some steep terrain and did so effortlessly once I got the first move. I spent the rest of my session trying some things and seeing how far I could get. I breast planted into the wall (yes quite literally) and got further up some of the more difficult v2/3s for me and further up a v3/4 so all in all not a waste of time.

I’m very bad at assessing how ill I am based on symptoms because I could feel dreadful and have it only be cognitive screen scaring fatigue or it could be actual fatigue. I don’t know the difference. Being able to climb means my body has that time to give me subtle signs, telling me when it’s not coping with life.

Since coming back I have learnt to not measure my progress by grades or colour of climb. But rather to measure it on the skills I’m developing. On my ability to deal with specific types of holds or parts of wall. I really want to improve my overhang work and eventually my roof work as I have always been useless at these things. I also want to be able to dyno although I tried dynoing something as someone told me too and actually got closer to the move by being static… In terms of specific holds I want to get more confident on volumes and slopers as these have always been points of low confidence with me and my old wall didn’t really have volumy climbs so I haven’t had much exposure.

It’s way more satisfying to measure progress in that way. The final thing I have learnt is to just try things. Even if they’re outside your current grade range or look a little scary, it doesn’t matter if your not able to top it – just getting yourself used to the different hold types and movement types is an important step in pushing those grades. The caveat here is be careful and don’t risk an injury. I know I can’t crimp anymore because I have no strength and my fingers are unstable as is. Instead of trying to kill my fingers I’ve been mindful. If my fingers start hurting, I ease up. If I really want to try that crimpy problem and the crimps are too much, I’ve been trying to find creative ways around them. Just trying things is fun and it’s also a good way to show progression. If you can get further up something marginally outside your grade range than you could the session before, that feels good. That’s the reward of bouldering.

As with the last post the pictures are old! But hoping to go for a family and closest friend sesh whilst I’m home for Christmas and I’ll be taking it easy but hopefully we’ll get some fresh pics!

Working, Climbing and Endo Flare’s

Disclaimer: All climbing pictures are of me in 2016.Seeing as last weeks week in the life went down so well I thought this weeks post should be another week in the life, so without further ado lets start.

Monday came, as Monday always comes. I had work cause 9-5 life so of course I did and blew up some balloons and did some more shadowing. I also noticed that I was feeling a lot more settled than I did last week, which was nice. I cancelled by BT contract and ordered a data dongle (which hilariously got delivered home home) I had climbing in the evening as a signed up to a technique coaching which was really chill and a really nice refresher of all the things I know but are really hard to put into practice once your on the wall and panicking. I also pushed myself put of my comfort zone and achieved things I wouldn’t have been able to do when I was stronger a few years ago because they would have been so far out of said comfort zone. I used to do V5s on slabs but put me on an overhang and no. Now I’m a consistent V1-3 (almost). It makes me really happy to see how much I’ve come on just in a few weeks really! I’m not amazing but I’m improving and trying my best and that’s what matters.

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Tuesday we won fourth place for our decorations at work. I did more cutting, more shadowing and we had a few snowball fights. My endo pain was really bad on Tuesday and not in that sort of majorly overcompensaty way but in that I’m kind of overcompensating but also very easily irritated and if you know me well enough very much showing it. I came home roasted some veggies tried the quorn chicken fillets which are the closest thing to chicken I’ve had without actually being chicken. Blew my mind. When looking to try and empty my dropbox I found my graduation – realised just how cringe I look just before I go up the 2nd time. Deffo not TV material nor photogenic. I then found it funny that me. Me of all people graduated top of the class. If you think about it, I spent most of first year unable to sit through 30 minutes of a class without beyond excruciating endometriosis pain cause it really affected my bladder at the time. I then relapsed into ME and ended up largely bed bound. It was thanks to my uni being so helpful and moving me to the centre of campus for third year that I could attend any lectures atall. I fought through severe pain, pain I cannot deal with now without getting close to losing it. I’m honestly so proud of myself. I may not have a graduate job but that’s okay. I know I will one day.

Wednesday was hell on earth. I didn’t really have anyone to talk to at work cause of where I was sitting and my assigned reading took an hour. With the extra reading I assigned myself another hour but it was v boring and v slow although I was fortunate enough to get told to go home early and being the team player I am – I posted a letter on my way home. I feel like my line manager is a bit too touchy feely false nicey. But I don’t know. Such is life. I seem to attract people like that. Like seriously so I’m used to it and I’m happy and once I start doing actual work I’ll be happier. My endo was causing some kidney pain in my right kidney (well presumably cause the patterns of pain) and my left ovary and I partially dislocated my right ankle on my way home. I went climbing and we did some dyno work and I tried campusing for the first time! It was very fun although I have no upper body strength so had to rely on swinging alone and as a result couldn’t get far. The campusing also caused my endometriosis to flare and lead to some intense pain from kidneys down.  I also did two blues (so like V2/3 ish)  that I couldn’t do on Monday and I did them with ease. Funny that isn’t it. Also story of my life. Can’t do something one day, flashes it the next.

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As a result we sported the sleep deprived Han on Thursday. And v nauseous and ya know when you start getting those contraction like pains in your uterus. That was me. But I had log ins at work. Worked numerous cases and asked if I needed to go home more than once but did I actually go home early? Nah. The thing with being chronically ill is that it can always get worse. And what then? Working full time with them is about utilising those sick periods and sick days carefully. And do you know what, it’s a balance I need to learn to strike. I’ve been working full time (different roles) since August and not one sick day yet, I plan to keep it that way although what with me wanting a gyne referral and a laparoscopy it won’t. And the nature of chronic illness in general is that it won’t. But a     girl can dream. I got home, tried to get some nutrition in me and then felt beyond unbearably sick so didn’t move all night. It had fortunately eased before sleep time though because otherwise it would have been another sleepless night.

Friday I didn’t feel great when I woke up and wasn’t sure if it was PEM from the climbing sesh on Wednesday starting or just my ME being it’s usual self and interrupting with my mornings. We had a team pizza lunch at work which was nice and I definitely established that my ME symptoms were PEM throughout the afternoon. I literally came home. Napped. Got up to get food and ended up stuck on the floor. So yah PEM.

Fair to say I then didn’t get out of bed until 10am this morning! I’m currently in the library to upload this and do some application work then I’ll go back home and rest and probably make Christmas cards to keep me occupied as I don’t think I’ll be well enough to read the challenging book I’ve started and I only decided to make xmas cards today! With 4 days to go. Yes I know my stupidity.

One more climb before Christmas! Likely Monday after work as the climbing bug has hit me hard again. And I would miss it too much otherwise. Will take it easy if I’m half as pre-syncope like as I am today but gonna go!

Happy holidays everyone. I’ll be back next week with the big 2019 post!

A week in my life as a working girl

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I was contemplating writing a somewhat inspiring and helpful post this week but honestly, I just want to write about the last week of my life. Because it has been a week. The stress, the tears, the triumph and the pure bliss. The hilariously bad health, the feelings of inadequacy and the realisations. It really has been a week. And that’s without discussing the state of UK politics. No, I am not happy and yes I am worried about the future of the country – especially for the disabled, and chronically ill. People like me. Who rely on a fully functioning NHS to manage life? But that aside let’s talk about my week.

So, Monday. Monday, Monday, Monday. I think my ME finally caught up with me on Monday, I couldn’t stand up at all when I woke up and finally got myself sitting up and to the end of my bed. Maybe that was a sign that I should have called in sick. Not sure how “Hi I’m having an ME flare” on my first day on team would have gone down but to tell you the truth, I didn’t even think about calling in sick. Something just didn’t click. I never learn to tell you the truth. I put on a mask at work. A façade that works better than it needs to and probably works to my detriment.

Work happened. I don’t really have much so say about what happened. Did a little shadowing because not much else to do when you don’t even have a computer log in. Learnt some stuff. Kind of like my team, kind of don’t. Basically, an average job. I get home, get my incorrect contract, putting me at a grade higher than I actually am. How one makes that mistake – not just to me but another person, I don’t know. But such is life. On Monday, I very quickly realised how much of a mistake it was to go to work. I got home, had a drop attack and was on the floor unable to move, sit up or anything having seizure like shakes. Made me realise how disgusting the hallway is as well as that I really could do with investing in a wheelchair or at least a walker to help prevent these things and allow me to get around the flat when I’m that bad. Do I have that money? No? Do I have any money? Also no.

Tried to sort out my Wi-Fi and spent a ridiculous amount of money in doing so. No WIFI is a common theme this week and every week since I’ve moved.

Tuesday was the first day I got the stick out in this city. There’s been plenty of times I probably should have been using it before, but Tuesday I knew I had to after Monday nights events. Did more shadowing, cut out some Disney characters (no I do not work at a primary school!) but not going to lie I did enjoy being a bit crafty. Also had an awks chat with the deputy line manager, cause walking stick does that. And not that I’m not open about my illnesses, I am to an extent – especially on social media, but I’ll never say anywhere near all of it because I just can’t. It’s a defence mechanism and it’s impossible. I also had to go see my GPs pharmacist about meds which was fun. Luckily, she agreed I could stay on them all! I was having an endo flare on Tuesday. Weird cause my periods just finished and asides from the birthday party and v bad breaking free sesh interrupting my sleep I had excruciating pain. I do sometimes have an issue with endo pain that ice helps to an extent, but ice also makes it worse. It was a simultaneous heat ice job for sure.

Wednesday the endo flare was worse but did that stop me from climbing. No. Did I need it, and did it reduce the pain in the moment. Yes. Do you know why because passion is the key to dealing with chronic pain. Passion is how I succeeded in my degree and passion is how I now climb again. Had fun, did things that would have been a no brainer 3 years ago but made me proud to be capable today. I think my technique is better today than when I was able to do some V5s back in the day. As my endo pain was bad and I partially dislocated my left hip (as I often do climbing these days) which made the pain worse once I was back, I forgot to stretch and definitely felt that I was tight Thursday morning! Although I was walking unaided Thursday which is always blissful.

Thursday was stressful after work. Like too many places to be at once and it was the all-important voting day. Work itself was okay. I got even more of an impression that the biggest characters really are not my sort of people but hey in 9 months I can be gone if I want to be and I will be if I get a very specific training contract or the law commission research assistant job. I realised I missed those simpler times when I could just research family law all day because let’s face it. Academically, I’m definitely a family and child lawyer. Practically, we’ll see, I feel I could sink my teeth into and love many areas. I’m enjoying employment right now and find that interesting due the fact that it has both business and personal sides to it.

On Friday (today) I finally understood the habitual residence thing on the family law court orders and got to look at another family law court order. Not expected in my current job! I also did more cutting and shadowing and definitely have the impression that certain people think I don’t try enough, don’t care and are definitely not my sort of people but I can be nice and respect and like people for the purpose of work. Also, that’s the minority. I just need to not get too affected by it. Went home, had another drop attack which aggravated the ankle I injured by falling when climbing down on Wednesday but hopefully not too badly. It was healing nicely. I still have no Wi-Fi and thus no stable internet connection, but I think I’m going to invest in a data dongle as I can’t deal with this whole engineer thing anymore. And for my health and productivity I need that stable connection. I missed out on finishing my Stanford scholarship application by the deadline because I didn’t have anywhere to go that was quiet enough to film and had a stable and fast enough connection. And fine. I wasn’t getting in anyway because lots of other things went wrong and to tell you the truth, I like working, I don’t want another three years of full time education unless it’s to do a PhD and specialise and some scary stuff is happening with my health right now that needs dealing with. I also need to get this endo surgery sorted and honestly if I can get the referral that will motivate me to stay in one place until I have closure. I’m having a flare and it’s not okay. I need to know if it is or it isn’t and the pain is so excruciating that I need to grow up, woman up and get that surgery. It’s the only way to know either way.

I can’t deal with my health in America. So silver linings and all that. Sometimes things aren’t meant to be and that’s okay! It doesn’t mean your not enough. It just means things take time and we are all different, all have different priorities and god has different plans for all of us.

 

The stresses of working full time with a chronic illness

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I should not be sitting in the library on my birthday near tears over numerous things that have caused this. And one of those is working whilst chronically ill related, and others are just indirectly linked somewhat because growing up with chronic illnesses has made me feel inadequate. It’s made me feel like I’m less than. I’m caught between constantly having to prove these illnesses and feeling this overwhelming need to push myself harder than most in order to prove that I’m a worthwhile human being.

It sucks.

I’m literally two seconds away from not going home for Christmas because it’s too expensive, I’m not being paid my full wage this month and I’ve only just found out and because I know I need time out for medical appointments, and I already have one holiday day this month I can’t ask for the 27th off – which would make it a lot cheaper and less likely to put me in a flare.

And that’s just the half of the near tears. I also have a GP appointment during work hours next week which I need to tell my deputy line manager about. And normally I’d arrange out of work for GP because that’s self motivated and self started but this is about getting my medication which I absolutely need by Tuesday. I’ve already reduced my dose in order to do that and I can’t reduce it any further. I moved up north to do this job, so I’m with a new GP. The GP is being pedantic and won’t issue my repeats until they’ve seen me. So I try to negotiate outside of working hours but without me running out of meds beyond what is manageable and I can’t. This means that I have an appointment next Tuesday afternoon and have to leave work at 3:45 (if I get an uber) – which although I really can’t afford I’m gonna have to.

So I can’t be nice and fluffy about it. Just asking – or saying more like gives me so much anxiety. Especially when I’ve been on reduced hours these past couple of weeks and what if someone asks why it couldn’t have been done then. I mean I have the answers. I honestly didn’t realise the GP would have to see me until today. They’re repeats after all and next Tuesday is literally the earliest day that could see me. It’s not my fault, but I feel like it is.

I feel like it creates a bad impression of myself and that comparably I’m making excuses not to be in work.

Which I am absolutely not. I will happily make up the hours by coming in an hour early or whatever configuration they would like. But because organisation policy says to make appointments outside of work time I feel like it’ll be looked down upon and that it may even impact me passing probation.

The entire situation is ridiculous. And I know it’s not just me who feels like this. There’s so many others who feel that because they’re chronically ill they have to try 10X harder to be liked and respected. I think that’s the problem with how society views disability as a whole and how it’s represented in mainstream media.

You’re either an inspiration because despite your disability you’ve done groundbreakingly amazing things or your just lazy and not trying enough. I don’t want to be lumped in the not trying enough pot so I try too hard. And it’s so hard to stop that. But sometimes enough is enough. At the point I NEED my medication.  Being in so much pain your in tears is  nasty – which is why I need the gabapentin, that and because it is potentially addictive dependency is a thing. I know if I forget to take it for too long I get nauseous and then it gets to the point where I literally can’t get off the bathroom floor.

I would like to highlight that dependency and addiction are two different things. I class addiction as more of a mental and psychological dependency – generally because of positive side effects the drug has that are unrelated to what it is for. Dependency however is more of a physiological reaction from your body getting used to being something for so long. Dependency is why with some drugs you have to taper down – in order to avoid debilitating withdrawal. This isn’t necessarily because your addicted. It’s literally standard protocol for some prescription medications. 

The reason I can work is because of the meds I’m on thus I need to get the meds on time. I have bills to pay. I have adult responsibilities.

I want to write this post to send a message that A) Doctors please please be more flexible. I don’t know what the solution is here. I don’t know how the NHS can resolve the issues with getting a medical appointment at a convenient times without GPs lives being even more about work than it already is. Maybe it’s making telephone consultations for a prescription review standard common practice. Hey maybe even facetime.

B) Employers please realise that us chronically ill people are some of the most anxious, stressed out and concerned about our reputation people you will ever manage. Being chronically ill in itself is a full time job. We are also some of the most hardworking and dedicated people. Even if you also managed x who had the same condition and you think they were better, missed less work, went to more social events it doesn’t mean we are trying less than x. It just means these conditions are highly variable and we all have different levels of responsibility outside of work.

C) If you are chronically ill and working full time, even if your conditions are under more control than mine are and you for all purposes feel well most of the time you are amazing. Stay strong and all of that cheesy stuff! Please don’t ever feel bad for putting your health first. I know we’re all quite bad at that anyway. I push myself to work when most people absolutely wouldn’t do. I even do this thing of overcompensating and acting extra bubbly at work on a worse day. And find that’s my choice, that’s what I need to do. But I shouldn’t feel bad for prioritising appointments over an hour of work if I can’t negotiate them out of work within a reasonable time scale. (That time scale is different for each appointment too!) Remember the Equality Act 2010 and the reasonable adjustments. Now doesn’t mean you’ll get everything. I can’t get flexible working until I’ve passed probation and that would really help remove this medical appointment stress but such is life. But it does mean that your employer should allow you to take that time for medical appointments, ideally without making it up. (because there are difficulties with that for people with a condition like ME.). Now I always will offer to make it up but that’s just me.

Anyway. This was a lot longer than I wanted it to be. But hoping someone else can relate and that we have all learnt something even if it’s to just not be so hard on yourself.