The lesser spoken symptoms of ME and EDS

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It’s nearing the end of all the awareness months and just to get that lil bit more awareness out I thought I’d focus on the not just fatigue parts of ME and the not just joints part of H-eds. Now I do want to add a disclaimer that these are my experiences of symptoms. Not everybody’s. I have a mild case of EDS and co so understandably my experiences are different to someone with a more severe case. My ME is here there and everywhere in severity although my new supplements are getting me out of the horrific flare I’ve been in. We love D-ribose. The taste no. Not collapsing multiple times a day, just trying to get to the bathroom yes. I’ve never been severe, or super severe though so although those symptoms have happened they’re not a constant.

That was way too long of an introduction! Lets get on with the content.

EDS is bladder pain, bladder discomfort. The more full your bladder is the harder it is to urinate. The pain feels like it’s growing by the minute and it’s all consuming. You get frequent infections.

It’s nausea, food just not feeling like it digests. Even drinking water can cause nausea and a sort of sloshy feeling that a healthy body would only get if they drank too much. I personally find squash and diet coke kinder to my stomach than water, no idea why that is! It’s spending money on countless anti-nausea remedies and OTC medication, finding often they are of limited effect. GPs are reluctant to offer anti-emetic prescriptions in the UK.

It’s bloating, retaining so much water that your painfully bloated you feel and look pregnant and go up a clothes size or two on bloat alone.

It’s reflux, sometimes so bad that it keeps you up at night.

ME is pain, never ending pain. Frequent migraines, light sensitivity which not only causes pain but dizziness. Laying in a bedroom with the curtains seldom fully open really gets quite depressing.

It’s unbearable head and neck pressure. It can be kind of eased by hanging upside down at least for me but that’s not sustainable for a long period of time.

It’s drop attacks, heart palpitations, breathing difficulties.

The brain fog that leaves you feeling stupid and can be really quite scary at times.

Cold extremities despite being in a heatwave and sweltering.

Blurry vision. I don’t think the list of ME symptoms ever ends I could write a book, but it’d be a boring book so I won’t. I hope you’ve all either learnt something from this list or if your unlucky enough to have these conditions yourself or in the process of being diagnosed that this somehow helps make sense of your symptoms and makes you feel less alone.

 

 

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?

 

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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.

Lots of learning, subluxations and theatre.

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It’s time for another week in the life. I’m definitely considering two posts a week so I can do more of these but still write the awareness raising, life lesson and inspirational posts.

Anyway lets begin.

Monday was a work day. That 9-5 life. The cases were certainly better than they had been over the last few weeks but not great so I got 22 grants. Not enough but I’m not defining myself by my work stats or any other type of grade or number. 22 is so much better than the 10 I’d been scraping! I went home after work, ate food and tried to work on a family specific training contract application.

Tuesday I started shadowing some of the harder cases although I don’t think I quite braved taking the mouse myself then! The “red cases” like the red boulder problems I’d love to be stable on by the end of 2020 are such a huge step up! Lots of cognitive power and stress and disappointment. But I definitely appreciated a chance to learn something new and to give my wrists and fingers a break from standard desk based tasks as my joints have been struggling this week. I climbed in the evening and not gonna lie it wasn’t the best session and it was hard to not feel deflated but I did what I said I would and took it easy! I flashed the new set V1s and 2-3s of the day and started projecting some “swirly’s” which I feel in my soul so hopefully I’ll have a chance to get back to them. I also did an advanced footwork class and did my first ever roof move (on a v7 to practice heel hooks). I also very much realised my core needs work and that is part of why I’m still struggling with overhangs despite my technique on them improving. But hey, after being largely bed bound for so long what can I expect?

Wednesday, I was running on not much sleep. I’ve been struggling with sleep this week. With a combination of nausea, pain and noise from the pub next door it has been hard! Anywho. I felt super ill when I woke up in the morning and the coughing fit I had caused my right ovary to act up for the rest of the day. However my energy improved throughout the day and despite my joints feeling dreadful I went climbing (yes again). There’s a womens group on, on a Wednesday night which I like going to as the people are nice, most of them are better than be and give me useful tips which allow me to be the best me and it gets me trying new things on the wall without feeling silly. This Wednesday especially was incredible. It was quite chill, we spent a while just catching up and chatting before warming up. There were some new people there and it was the first session after Christmas so a lot to catch up on! Not gonna lie, I didn’t do the 10 squat jumps we were meant to as my body just couldn’t. I would have collapsed. (Just a warning sign to the ME flare that later ensued. I accomplished two v2-3s that I had been struggling with, due to fear more than anything else and realised that actually if I commit, I can do those big moves. They look scarier than they feel! I also resent a v2-3 in a more technical and much easier way as well as getting another v3-4 with some help and support from the more experienced members of the group. That’s what? 7 v3-4 problems I’ve now accomplished. Mostly slabby but it’s start to reaching my goals despite chronic illness. My muscles were struggling hard on Wednesday. Those little legs of mine were just not okay. I think this is why I fell of a V1 that I have yet to conquer (at a low height) and partially dislocated my elbow because I was a tit and put my arm down. I (yes am a tit) and continued climbing on it, so to this day. My elbow is still not 100%. But anywho. Good session and I came out of it feeling so positive and uplifted and it just reminded me of why I love this sport so so much.

Thursday was another learning at work day. I think it was Thursday that I really started to find my confidence with these red cases. In the afternoon the ME flare ensued so I got home and binged spinning out, curled up on the sofa. I couldn’t sleep that night cause the pressure in the back of my head and the dizziness so another not enough sleep night but such is life.

Friday was an interesting one. Even more confidence on those reds although I was feeling so unwell in the afternoon that I was just like “no. I can’t.” Honestly the pressure in the back of my head and the dizziness resulting meant that I was close to going home sick because I had visions of another car park incident. Hilariously enough. I didn’t and then (more Hannah may or may not be a tit) I went climbing. Because of my elbow I took myself to awesome walls as being on an auto belay would minimise the chances of making it worse (no high impact falls. Just low impact collapsing in a heap when it gets you down). This was my first time on a rope and colourful holds for 5 years or so. MADNESS. But it was great (although exhausting). I think I just completely forgot how to rope climb at the beginning of the session so I was using my arms too much which lead to v quick “shit I’m done”. Nevertheless, I ended up staying for two hours and I don’t think I’ve ever worked that hard. I’m not exactly sore from it but at the time it felt harder than any climbing I’ve done for years! I flashed numerous 5s. There were 2 I couldn’t do, but I think because I was so tired by the time I tried them. I also on sighted a 6a and 6a+. For a first rope session in a while I think that’s something to be proud of. I very sloppily got up most of a 6b, that I probably could have done in two parts but I tried numerous times and got more solid at what I could do however couldn’t find a way around my lack of quad strength and the fact that I couldn’t push to much on the wall with my right arm due to my elbow. If I go back before a reset it’s a project I’m definitely coming back to. I also tried two 6b+s which I know I can do all the moves of in my soul but stamina and the unique difficulties I have with balance, struggling to feel my hands and feet on the wall as well as stability and power meant they just were not happening. I for whatever reason undercrimped? Is that a thing. I realised today that maybe that hold was meant for a toe hook so might try that if I go back to it. It was a good session but bloody exhausting. I am definitely a boulderer. I don’t know when that conversion happened. (Think I could also be a lead climber tho cause my issue with top rope is the rope gets in your way sometimes!) I realised if I am going to do the whole competitive paraclimbing thing there is a lot of work to do! Although it probably is better to compete this year as a practice run for when I’m hopefully stronger and have a chance of doing well so…. paraclimbing nationals at the end of the feb may indeed happen.

Saturday was HAMILTON! It was incredible. I mean it’s Hamilton of course it was. I really liked the Eliza who was on (don’t know whose cast right now in the west end soz). I mean I literally cried at burn. And then the tears just continued. If you know, You know. I also really loved Jefferson! He was great fun. And King George always is. My collarbones wearnt’t in place all day and my neck was feeling unstable but it was so worth it! Isn’t Hamilton always?

Today, I finished spinning out and asides from trying to make sure I have semi order in my flat I’m really trying to rest. I can barely stand up so not hard. But also is.

I hope you all had a good week! I will be back with another post next week.

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.