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.

 

Working full time with a chronic illness

 

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Working full time with a chronic illness is rough and if you cant then that’s okay.  I also think whether your employer is supportive enough to make the necessary reasonable adjustments or indeed if those adjustments are reasonable. (I’m just about to read about that actually as despite being out of law school I’m still a law student at heart and law is power. Especially knowledge of employment law if you ever end up with a shitty employer.)

But anyway this blog post is going to give you some tips as to how to manage it if you’re at all in a position where you can. But firstly I’m going to say that if you’ve been in one place if employment for a while you are likely to be treated with more respect and given more leeway. Office politics. They are your best friend when in your favour and worst friend otherwise. If you see inequalities in those ways then unfortunately you’ll just have to deal with it if your coming back into the workforce.

On to the tips:

  1.  Be honest with your employer/line manager but not too honest – this is an interesting balance to strike but essentially if your not honest they’re not going to know if you need extra support and if you’re too honest they’ll start thinking your not up to the job, not trusting you, being completely and utterly irritating and just cause major anxiety.
  2. Only apply for jobs you have a reasonable chance of being able to do successfully. I.e if you can’t stand up all day don’t apply for a job that requires that.
  3. Ask for the adjustments you need and if they don’t give them to you take it up to the employment tribunal (Not straight away cause that shit costs money. Understand why not and if you can’t go to citizens advice for advice as they will know more of the nitty grittys of the Equality Act 2010.)
  4. Work in a way that works for you as much as you are able to.
  5. Appreciate that your going to have good days, bad days, average days and everything in-between. This is okay and it doesn’t mean your failing.
  6. If you can help it, don’t work for an agency – I don’t know if it’s real or imagined but I definitely feel a disparity between me an agency worker and so called “real people” (the not agency workers). Also although agency workers are gaining more legal rights they’re not 100% on par yet.
  7. Health first – by this I mean please take a day if you need to. I am useless at this myself but I help others are less so.  You need that time to rest and recuperate and you shouldn’t feel guilty for it.
  8. Meal prep, meal prep, meal prep. Otherwise you’ll be ordering a hell of a lot of take out.
  9. Believe in yourself, god, the universe etc. – I feel like people with chronic illnesses are often overly hard on themselves and overly critical. Try not to be, you can do this, you are enough. I believe in you.
  10. Final tip is to prioritise. You won’t be able to do all the things. Working full time is exhausting and so to successfully balance that with your other responsibilities, family, friends, hobbies, volunteering will be near impossible and will require successful prioritising and allowing time to rest.

I hope some of these were useful and helped if you’re in the position where you are currently working full time or looking to work full time whilst dealing with a chronic illness or two.