Reviewing my Journey from one end of the country to the other during lockdown

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You probably think I’ve gone mad at this point or atleast run out of ideas – writing about my travels from one end of the country to the other. But I am, so such is life. And yes I have many other potential blog posts, I’m also thinking about starting a law blog to keep me occupied when I leave my job, unless I’m too busy trying to find a new job because internalised ableism is a bitch. I’m in a weird position with my health right now. Not really well enough to work full time. Unable to walk for 10 minutes without PEM and more than a few minutes without hip issues so would struggle to get to a workplace multiple days a week and work productively for 5 days without an electric wheelchair which I  can’t afford. I am looking into a self propelling one though just so when I move back in with the fam they can push me around. (They’re abelist selves will hate that)  Anyway that’s beside the point.

I had to go back to the end of the country where I work for flat inspections and to pace. Sounds weird that. But I do find my health is better up here as I don’t have the constant noise of my family draining my energy. I eat whatever and I don’t have stairs to contend with.

So where to start. I didn’t rate wearing a facemask, espcecially not an overcized one but it was all I had and it looked cute so I rate that. I feel like going out in things that previously would have faced so much negaitive judgement is easier if you can make the item pretty. The train station in my town was eerily empty but I was able to sit down whilst I waited for the train so can’t really complain. On the train it was only me and a family in the carriage until the end of the journey when a couple of other people got on.

Getting off of the train in London was a weird experience. Many people were wearing the face masks wrong, maybe the government should start sharing easy instructions on how to use a facemask properly. Maybe they already do and I just haven’t seen it. I popped into WHSmith because I didn’t feel browsing boots meal deals for too long was appropriate and I wasn’t that hungry so I just got a Lucozade, some hand sanitizer and mini eggs. I know it’s June. But Easter choc is the best choc.

I have never seen London  so quiet  and as usual the walk to the jubilee line killed me.  But it was nice seeing hand sanitizer points throughout the underground network. Unfortunately I had to stand on the tube as well as I felt too anxious to walk through people to get to seats at a social distance as getting there would break the social distance.

I’m so utterly pathetic. I felt really quite unwell and honestly that’s the worst part of being in London with an invisible disability. Heck even when it’s in some way visible it’s a good day if someone offers you a seat. Although social distancing issues aside I’m normally good at hunting down the last seat if I’m not travelling in rush hour.

I could sit on the second tube I got though and nearly zoned out and missed my stop. I am a liability on public transport. Honestly I’m amazed I’ve never actually missed my stop before.

I decided to sit in the sun for a bit at  as I had just under an hour until my train once I got to the next main national rail station which was really nice although sun makes me super nauseous right now! The train station handed out facemasks to people who didn’t have them which I highly rate as at the time of posting it is now compulsory to wear facemasks on public transport in the UK.

The toilets were open at the station which was great and there were hand sanitiser points outside the toilets which I highly rate and lots of reminders about maintaining a social distance.

The second train was more chilled than it ever is although I was very happy to get off and be back home. Made the very stupid mistake of walking back to my flat despite being in a lot of pain. I was so out of breath despite that 10 minute walk not usually making me out of breath even when carrying stuff so that’s a definite sign that my bodies not where it was at the beginning of the year.

Travelling during this time was a lot less scary than I expected it to be so I hope this helps those who are suddenly realising a need for public transport as the country opens back up after not needing it for a while.

When lockdown ends please don’t forget us (ME awareness day 2020)

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ME or Myalgic encephalomyelitis is also known as Chronic Fatigue Syndrome. It is an illness categorized by Post Exertional Neurological Exhaustion.  This is a worsening of symptoms we already experience, such as dizziness, fatigue, pressure in the head and neck, migraines, difficulty speaking, brain fog, muscle weakness, widespread pain, numbness, temporary paralysis, nausea. noise and light sensitivity, full body shakes, sore throat and swollen glands. The list is never ending and it can be truly debilitating and overwhelming. This leaves many sufferers housebound of bed bound and only a small proportion  can work full time.

That scares me especially. I’ve always known by working full time I’m doing too much and my ability to continue without deteriorating has depended upon sacrifices and careful pacing. Especially in this season where I have deteriorated significantly. I am stuck on the sofa, often reclined or in bed. If I leave the house just to pop to the shops which are in a close proximity to my flat I get PENE. Working a full day, even reclined feels so unbearable that words don’t even exist to describe it.

This means many of us with ME are already isolated. Even if we can work for many of us it’s from home and work often floors us so much that we may not have the energy to reply to your messages in a timely manner let alone have an outside social life.

We’re always in lockdown. We’re always socially distancing and in some ways this period of lockdown has opened the world up for us. People are checking in on us and zoom is a thing. The worry is that once people start being able to go out into their social bubbles and back into the workplace is that we will be forgotten once more.

Missing inside our homes.

Please remember to check in on us. I know it can be frustrating because we don’t always have the strength to reply or for a full on coherent conversation but we greatly appreciate your checking in on us.

And please consider spreading awareness on behalf of us. There is still a lot of misinformation out there.

Even doctors believe we are lazy, just anxious and depressed, that exercise is good for us.

None of these things are true.

ME is real and can oftentimes be more debilitating than Cancer, MS and heart disease.

The contradictions in ME/CFS recovery

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Full recovery from ME is possible but rare, but I believe most people over time can improve their level of functioning. It’s just often so hard because of these contradictions and because of access to the things that may help. (I.e supplements, being able to afford not to work or afford to work less, a safe family environment that doesn’t cause flares if unable to work and thus afford to live alone.)

When you have ME exercise is the worst thing you can do. Right? But even that’s not as clear cut. Some level of gentle movement is essential i.e  laying down yoga or even rolling over in bed and slowly doing more household tasks by yourself. And there comes a stage in ME recovery where exercise is actually a necessary part of building that function back up. No more cardio than a walk but when carefully managed it plays a role.

You need to simultaneously not do too much but not do too little. Yet not doing too much kind of means doing too little. Generally pacing for recovery means doing 50% less than you think your able.

You need to try and have a sleep schedule, a routine, despite this sometimes being impossible.

Do you eat super healthy knowing this can often involve significant preparation, money and chewing energy or not? Honestly I’ve eaten super healthy and super not healthy and been at similar levels of functioning. I definitely need to stop with the chocolate for aesthetic reasons right now (Okay no one needs to stop with anything, eat what you want but I’d feel better about myself if I consumed less.) but there are times that all I can stomach is junk food. Don’t ask why but my body will go through times where it digests ultra processed food better than whole foods.

Coffee or no coffee?

Prescribed medication that may increase fatigue or not?

Navigating ME is like a minefield and the stress itself can cause symptoms to get worse because stress takes energy that we simply don’t have. It’s hard to know what to do and get consumed in the process.

It can all get very complex. So before you think someone isn’t trying enough to be well, understand these complexities and that it is mostly trial and error. With very small margins for error as it could cause a permanent set back.

 

Living with chronic illness in lockdown

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Many have said that lockdown gives the normal healthy population a taste of what it’s like to be chronically ill. The constant missing of something and the loss of purpose is very similar to what happens when you get a chronic illness. Especially one that causes you to lose your job, lose friends and end up largely housebound.

You could say that us chronically ill folks have been equipped to the challenges of social isolation.

However, social isolation and lockdown can bring up it’s own challenges.

Suddenly the whole world is trying to get fit and make gains by working out at home. Trying to be productive whilst in lockdown.

Doing all the things we wish we could spend our days doing but can’t.

I wish I could bake more than a super simple no mess recipe without payback. I wish I could spend an entire day reading. I can read for 10-20 minutes without having to take a break and can’t sustain that throughout the day. I wish I could delve into a new series and binge it in a day. Actually watching it, following it. Instead of dozing throughout and having it on in the background.

I wish I could spend hours perfecting tiktok dances. Instead one attempt and my chest acts up for a good hour.

Without discussing the fact that atleast in the UK able bodied people can have one exercise session outdoors a day there are so many things able bodied people can do whilst remaining at home.

I can understand the anger of some people in the chronic illness community over able bodied moaning in this regard, because seeing and knowing everything that can be done from home leaves you with the feeling that your yet again missing out.

The rhetoric that we have to learn a new skill, start a business and get fit in lockdown can make us feel like we’re not good enough.

Let alone difficulties some of us have in finding food delivery slots. I’m lucky I have a little Tesco express opposite me. But I would be unable to walk 10 minutes to the nearest supermarket then queue up outside the supermarket and then do my shopping and carry it home right now due to the flare I’m in. That trip was always exhausting without the flare and the queue.

However lockdown has also done good things for people with chronic illnesses. Suddenly we’re feeling more included and more connected to people as the world switches to embracing virtual communication and forms of socialisation.

For some of us, our quality of life has improved because this social aspect has come back into play.  I myself am feeling relived that I don’t have to overextend myself to look like a normal 22 year old. There’s less FOMO and less having to say no or saying yes and paying the price.

The switch to having to work from home and school from home is hopefully going to make lasting changes that lead to the world being more accessible for those with chronic illness and allow us to reach our full potential and I’d  like to think that people are now going to be more understanding towards people with chronic illness. Once they realise that getting to stay at home all day isn’t “lucky”. One can hope for a positive change from all this right?

How are you finding this period of social distancing?

 

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.

 

The one where my body forced me to slow down

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March has been such a month that I feel like there should be an entire blog post dedicated to it. I think I’ve hinted that I was previously running myself into the ground and March was the month my body said no.

It actually didn’t start horrifically and by that I mean the first couple of days of the month weren’t too bad. I onsighted all the things within my grade range on the autos up at the time. Even a 6b on the continuous overhang. And if you know me you know that the continuous overhang is hell! The pump is real but I stayed calm, focused on body positioning and somehow it happened.

The month then very quickly deteriorated. Both in terms of my health and my ability to climb. Although I did find ways around my bodies extra limitations and was climbing the same grades where it suited and could find a unique beta to compensate! Some things were also going on at work at the end of February which were negatively impacting on my mental health. I hated being in the office and believed by team hated me. I was over it by the second week of March but I do suspect the extra stress didn’t do me any good.

The month involved a lot of pretending I was okay through extreme dizziness and pressure in the back of my head. Through muscle weakness and balance issues. Through a non-existent level of concentration and decreased cognitive function. It took a toll on my work performance (although I will still largely hitting stats…) and meant I couldn’t project and step the climbing up a notch.

It also involved a lot of openly admitting that I wasn’t okay. Sitting on the mats, feeling incredibly dizzy and clearly not looking well. Openly admitting to my line manager and her manager that my ME is flaring and I wasn’t doing particularly great. I found I didn’t have the energy to get up early enough to put make up on anymore and if I did I felt so dizzy that I had to take mornings super slowly.

My mask well and truly gone.

I came 16th in a climbing competition, both in that round and on the overall. Topping 9 problems – which is more than I managed the previous month. I think the setting just suited me a lil better but maybe that’s a sign of actual progress. Had a great time with friends, adrenalined up because my façade is important. Not for other people but for myself.

For one night I was a normal 22 year old.

I got a grade 2 hamstring strain and did some damage to the ligaments in the back of my knee. Climbed with one leg 2 days later because both got too painful. Not for my pain tolarence but because I knew I was injured although at that point had not gone to get it checked out.

March might actually be the month I saw some sense. Yes my body forced me to stop. I was well and truly done. That first sick day and a half. I couldn’t sit through that endometriosis pain for another minute. I couldn’t sit through those ME symptoms for another minute.

But I also saw some sense. At some point something clicked and I was like no.

Health first. (I say this all the time then we swiftly give up)

I got my leg checked out after it hadn’t improved in four days. Something I wouldn’t normally do which is why I still have so many lasting injuries. I’ve had a back injury since the end of November.

I peaced out of the office at 9:30 one morning because my ME was not playing and used some sense by taking the next day off.

I expressed by concerns over the you know what situation and peaced out for a further 10 days.

Ironically I then got a suspected case of you know what that night. If that doesn’t describe ME in a nutshell I don’t know what does. My body finally saw a chance to rest and it got sick.

The last nearly two weeks have been spent trying to be productive and get what I need done, mainly from laying on the couch. They have also been spent unable to walk unaided, collapsing, passing out. Unable to cook, which fortunately for me I had sufficiently meal prepped minus a chilli I had to make. (By make I mean put beans in a pan, put sweetcorn in the pan, put the jar of sauce in a pan and bobs your uncle).

I have ordered pizzas because I’ve not been able to stomach the food I have nor go to a shop to get the food. There’s been lots of naps. Lots of being unable to nap but feeling too unwell to do anything. And I mean anything.

I’ve had many symptoms I’ve not had in a while and it’s been scary.

The world has changed and horrible as it sounds it’s nice to not feel inadequate because of my ME. It’s nice to not have to deal with the “I can’t say no” when I’m invited somewhere that would likely give me payback.

It’s nice to not have to try to be a normal functioning 22 year old yet still falling short.

God has definitely carried be through the times. I’ve got through being sick before. I can do it again, as long as I put the work in. Take the supplements I have, gentle movement, slowly getting more intense as I recover from this virus (I mean slowly). The church. In terms of the physical space doesn’t exist right now for many of us, if not all of us reading this. But we can still find ways to worship and feel gods presence. I’m going to join an online service at 6pm tonight. Can these online services last pls! Faith is how I stay grounded.

This month has been a weird one. For everyone. But we’re nearly through it. The weather is currently glorious, although I’m currently in a dressing gown with my electric blanket on and my heating on… It’s sunny. And hopefully as spring and summer come in there will be more sun to come!

That’s it from me. How’s March been for you?

 

 

 

This is ME

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I’m gonna use this time of self isolation to raise awareness for ME/CFS. This COVID-19 shit and especially the UK vulnerability criteria and how mine and my GP feel about it has made me realise how little people know about this illness. It’s kinda like the UK doesn’t care that we’re at risk of significant and serious relapse because we won’t die. GPs are also seeming to ignore what the ME association and Action for ME believe about the interaction between COVID-19 and ME/CFS. It’s not hard to google kids.

The sad thing is many GPs are not at all educated about this condition and there was a recent study showing some shocking statistics about what GPs believe about the illness and the people with the illness.  If even GPs believe we’re lazy, we need to exercise more and that it’s not a real illness then how are we supposed to get help and treatment? Now in my personal case it probably doesn’t help that I’m awful at advocating for myself and I never push to get what I want or tell the full story.

But telling the full story is hard. It’s hard to explain what’s wrong when in essence it sounds like everything is wrong.

My ME affects me in a myriad of ways. I get numbness, tingling and even burning in my feet and left hand. It leads to difficulty controlling my hands and my legs will oftentimes forget how to be legs.  I have seizure like shakes which hurt. It’s like a full on core workout. I can’t move throughout them and I can’t stop them. But I’m aware of them. I’m dizzy, even when laying down. I feel intense pressure in my head. Struggle to breath, get heart palpitations. Easy muscle fatiguability, I struggle to keep my eyes open. Nausea, Cognitive dysfunction and full body pain. I have a chronic sore throat and cough and often have a low grade cold. I’m sensitive to light, less so noise and smell but it does happen. My glands swell, my chest hurts. I have visual disturbances, most commonly in my left eye.

Yet I function, or atleast look like I function as the normal healthy adult. Yes I’ve had a lot of sick days lately. ME flares suck. Now I’m self isolating (by choice, sorry finances) and hilariously last night developed coronavirus symptoms. I was coughing more than usual and this morning I spiked a fever so absolutely no work until next friday! I get fevers a lot, and I don’t think it’s COVID-19 but can never be too careful in a global pandemic.

But for 6 years of ME, having never had a sick day from a job until 2 weeks ago is impressive.

What they don’t see is how much I have to push myself to do these things. How unwell I feel doing these things and the state of my flat. They don’t see how unwell I am when I wake up in the morning and the difficulties I have showering and washing/brushing my hair. The difficulties I have cooking or doing a form of exercise that isn’t climbing.

Yes I am well for someone with ME. I’m lucky right now… But it’s still significant. It’s still a significant daily battle with all of these symptoms at varying degrees. I’ve heard that most people with ME who can work full time only feel occasionally ill. I am not one of those people. I push and I fight, because there is nothing worse than feeling like a burden on the world and feeling misunderstood or feeling like your not enough.

There is progress being made in understanding this illness. It just hasn’t reached the mainstream yet and it needs to. We need proper education, proper research and as always more awareness.

 

Injuries, fatigue and new highs

 

This week has been an interesting one and exhausting af. I already started the week quite low on spoons because I haven’t had enough rest at the weekends for the last couple of weeks. Monday, I had work and then went climbing as I had signed up to a coaching session. I found it really useful and after, with the help of some friendly gym people got pretty far up a v3-4 that is soooo not me. Crimpy and overhanging. I blame the attempts on that problem for the state my left hand is in. I also completed a V3-4 which I had literally just been misreading the pervious week! (again friendly people are useful). I also did a few of the comp problems that looked challenging but doable in no more than 3 attempts. It was nice to see that there was a range of problems at a level that I could do in a comp setting tbh. Seeing as I wimped out of the comp for that reason.

So we come to Tuesday when I find all the tendons are sore. In both hands. I’d been struggling a little with my right hand but nothing major and no issues with climbing just tendons overreacting cause hypermobility puts more strain on them. But such is life, hey? We had four hours of no work to do and I legit went crazy and signed up to paranationals. Although I’m not a route climber by discipline anymore and find bouldering way more fun and social despite being more of a challenge I want to get myself back into competing and a) I’m a paraclimber b) I definitely feel more secure competing on a top rope.

Wednesday was a climbing day (and a work day but nothing of interest occurred). Climbing was good and despite my best intentions to not put too much pressure through my fingers I may have but didn’t make the situation any worse and did a V3 I couldn’t do the first move of a month ago in two parts, completed another V3-4 and flashed a V2-3 antistyle comp problem. So it was worth it.

Thursday I climbed again and really did my fingers in on some two finger pockets on a 6b+ I didn’t quite manage. But that’s okay. I couldn’t try it more than once because of my fingers but I know I have it in me. Shame I don’t go to that wall often enough! I think It’ll be a couple of weeks now until my next visit.

The middle left hand finger got destroyed a little more on Friday when I was putting my jeans on. Yes putting my jeans on. I had a rheumatology appointment and H-eds was mentioned for the first time and there was talk about referring me to a fibro clinic. Also had another three viles of blood drawn and was left not feeling at all well and with no head in the game at work but some days that’s how it is. We win some and lose some. I went home after work, rested and ordered wagas cause I was just so dizzy and also deserved it.

Saturday, I worked on an application and rested before I went climbing and despite only intending on 4s and 5s ended up flashing a 6b and 6b+ and finishing off a v steep and elongated 6a+ (I can confirm when the auto belay lowered me I was on the floor. It was exhausting). I also tried a couple of 6cs and got pretty far. One I tried to project a little and got most of the moves down but was just too weak to send. The other I didn’t want to try twice as it was crimpy and although slabby I was conscious of the stress on my fingers. But 6c I will get you again.

Then I got home and realised my tendon was a little more of a mess. So now we are buddy taped and hopefully all will be good by Wednesday (my next climb). My elbow has also been playing up again as I have a loose piece of bone or something in it and injuring it by falling a few weeks ago aggravated that so would rather not one hand climb. Also getting lots of rest as I can barely stand without almost passing out today!

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.