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.

 

I saw you do x so you’re well enough to work

I feel this is a common misconception that muggles have, as if work is a low energy task that we an just do if we’re atall seen out of the house. And it hurts us chronic illness wizards beause we then very much fear being sruitinised for every little move and push ourselves to go into work even though we very much should not be at work. We put on our fake smile and go with it beause anything is better than being stuck in a house.

But it is very much a misconception, regardless of the job you have. Yes I may be able to pop to the shop up the top of my road to grab some essentials but that doesn’t necessarily mean my “sick leave” is me faking ill beause I’m lazy and I cannot be bothered.

See the thing is, having ME is not that linear. I wish it was.

The problem is working 8 hours a day even if it’s largely desk based is a high energy task and the nature of work being 8 hours with one break makes it even more high energy. For anyone trying to maintain they’re focus and accuracy especially if doing repetitive tasks is difficult. For someone with ME this is even more difficult of a task to do and makes us feel really poorly.

Compare that to just popping to the shops, yeah it takes energy but I can rest after what is a 10 minute round trip. Not all activity is equal and just because we’re off sick because of our disability it doesn’t mean that we are off sick from adult responsibilities. They’ll always be there.

On the more extreme end of this you may see someone with ME or any other invisible illness going out to the cinema or going to the theatre. Theatre trips are booked in advance so yes I will be going. And that one day of activity or two hours if you live in a convenient location is nothing compared to working 8 hours a day 5 days a week. You have an opportunity to rest during the day for those two hours. The same goes if you see someone out for a meal with they’re family or friends.

Stop being quick to judge. And I’m saying this as someone who also used to be quick to judge because I sacrificed all else for my degree so when other chronically ill people were struggling and I saw that in social media I just felt they weren’t prioritising their degree enough and putting too many spoons into having fun.

But here’s the thing. Just because we’re disabled doesn’t mean we’re less worthy of a work life balance. And the view that if you are capable of doing anything else then you are capable of working can be very harmful to people with invisible illnesses both physically and mentally.

Do you know why? Because it leads us to push ourselves to dangerous limits in order to avoid such scrutiny. And that is not okay. We shouldn’t feel the need to do that.

Invisible illnesses come in all shapes, sizes and abilities. They often fluctuate over time. We all need to learn to stop being so quick to judge and just respect that we all have our own limits.

“It can’t be that bad” An open letter to those without chronic pain

 

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Here’s the thing. We have to adjust. We have to adapt.

If we didn’t we would have no life.

Here’s the thing. Some of us and arguably most of us are masters at hiding our extreme symptoms. Pain, weakness, dizziness, visual issues and the other 99 problems that come with having a chronic illness or if you’re really lucky multiple chronic illnesses.

Only earlier today, after an episode of paralytic fatigue I was left having to crawl around the house because I physically could not stand up. Was anyone in? No. Did anyone see? No. Does anyone ever see?

Sometimes. Last Thursday they did. But often I can adrenaline myself up to stay upright for only small interactions. Or my family doesn’t actually witness it despite them being in. (The countless times I’ve had to crawl up the stairs comes to mind here).

Does that mean it’s not that bad? No. It is that bad. I have major issues getting more pain medication because I’m on a dose of gabapentin that most doctors wouldn’t prescribe to someone so young – one that makes pharmacists repeatedly check it is correct. Despite this, I’m still in a lot of pain! Pain that even with double dosing OTC meds does not ease.

It means I’ve learnt to hide my pain in response to being called a hypochondriac, being disbelieved. Being moaned at for complaining so much, for being so negative. The thing is it’s easier to not say. Even without the above. It’s often easier just to pretend.

But our pretending does not mean it’s not that bad and the second we’re out of sight the pain will often increase tenfold – in response to hiding it for so long. This can present as painsomnia – a phenomenon leaving chronic pain suffers unable to sleep because we’ve spent so long during the day trying to ignore our pain.

It is that bad!

Another thing I would like to point out is the differing points of references between someone with chronic illness and someone without. I would also like to point out that even with the same chronic illness we all have different points of reference, different priorities and different struggles.

Different points of reference mean we tolerate more. It also sometimes means we don’t realise how ill we are until it really hits – hence oftentimes over pushing to the max as well as sometimes having to act on the side of caution if we have big commitments coming up.

I’m going to repeat again. It is that bad!

So please, be considerate. Be understanding. Even of what you can’t see or understand. Listen to us and help us. Don’t underestimate our struggles. That’s all we ask of you. This battle is a difficult one. A little kindness can go a long way.

I quit my job because of my health and it’s not the end of the world

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Imagine this. Three weeks ago you were full of life. Doing better than ever. Yes you were still ill. You were still symptomatic but you were full of life – full of hopes, full of dreams, full of excitement and it was foreseeable that you could actually put all of those into action.

Imagine starting a temporary job that you ended up loving. The people, the places, the fact that it was out of an office, the chaotic and varied nature of it. And yes. I was symptomatic. Yes my joints were fucked. Yes I wore braces more often than not but I could do it. I could manage.

I was working over my contracted hours by choice and genuinely loving being able to do all the things.

And then life happens.

And life, as life often does hit me like a ton of bricks.

I had a little crash. Well I say little. Realistically it ended up not being that little. Presumably because it hit in the middle of a full day excursion so I had no choice but to deal. So what actually happened was that I ended up unable to move my legs for two hours which was fun. But anyway – despite feeling beyond dreadful the next day I thought I could push through and work as long as I took precautions and I did – nothing much else to say about that other than looking back I realise how stupid I was.

So fucking stupid. I’ve lived with ME for 5 years, I should have known better.

The next few days featured getting stuck in showers, chest pain, heart palpitations, difficulty breathing, shakiness, dizziness.

All the signs that would let the average person know they had to stop or at the very least slow down. But did I?

No.

Admittedly that’s because I could adrenaline myself up to work and so I felt okay. Not well, but okay. If I really felt that bad at the time,  I would have swapped shifts with someone, especially for excursions. But I didn’t. I never felt that bad at the time.

God do I wish my body didn’t have this magical running on adrenaline power. I also wish I hadn’t gone to Oxford. Everyone said I shouldn’t be going. Everyone who saw the state I was in the night before.

But what did this stubborn bitch do. She went. Because I woke up feeling better than I did the night before and my thinking clearly went no further than that.

And then shit happened. I’m gonna spare medical details because they’re too painful to talk about. But to summarise, I ended up in hospital, and felt no better – if not worse after a day to rest. My body literally gave up on me. And me knowing my body knew there was no way I was finishing the last 2 weeks of this contract. It wouldn’t have been safe for anyone and would have certainty jeopardised any chances of a quick recovery. (Recovery being defined as where I was three weeks ago.)

So I made the brave decision to leave. I’m saying brave because it was difficult and it would have been so much easier to stay. I need the income, the experience and I was happy. I also need to know I can. Which of course I can and if I can’t work full time then that’s just statistics really.

Most people with ME/CFS can’t work full time at all. Very few would be able to successfully activity lead at a summer school – and I doubt any without some degree of payback.

This doesn’t reflect on me as a person or anyone else who has had to do this. It also doesn’t mean those two weeks were wasted.

It’s just life. Yet another curveball, another setback.

Another hurdle. But what I have learnt, is that this is a hurdle I can jump. I will see the other side.

 

 

Just chronic illness things…

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  1. Not being able to brush your hair due to fatigue, dizziness or joint instability.
  2. Being an expert at willing yourself to not vomit until the end of that class, exam, train journey….
  3. Coordination issues and generally feeling unstable on your feet.
  4. Being able to pretend your not in pain and act for all purposes normal even when you have really severe pain.
  5. Your bed is also your work/hobby ground
  6. YouTube and Netflix are your best friends even though you can’t actually follow much because brain fog.
  7. Following on from that, actually physically reading is such a struggle that audible is also your best friend.
  8. “Oh, I get tired to”
  9. “Will you ever get better?”/”Are you feeling better?”
  10. “You don’t look sick”
  11. Payback
  12. Feeling like your neck can’t  support your head.
  13. Your only friends are online
  14. Finding a job in your area that you are actually well enough to do is a challenge!
  15. Naps are life
  16. More doctors than friends.
  17. Questioning whether a bath or shower is the lesser evil
  18. Overdue laundry and cleaning
  19. You experience ALL types of pain
  20. Still havn’t shaved…
  21. Often drops things
  22. “Oh the toaster wasn’t plugged in! That’s why the bread didn’t toast”
  23. Overly sensitive to heat/cold
  24. Money worries
  25. Lives in dresses in summer months
  26. Migraines
  27. Following a recipe takes longer than it used to because brain fog!
  28. You have tried everything! From yoga, to veganism to herbal medicine to essential oils.
  29. Struggle to cross roads and get on the right escalator due to brain fog.
  30. Identifies with the term “spoonie”

ME/CFS awareness month

32466089256_6c0a77e003_zIt’s coming to the end of ME/CFS awareness month and I haven’t been able to do much in the way of awareness since it has been a month of exams for me. Exams now over I thought I’d write this post by way of raising awareness.

I guess the best place to start is ME/CFS stands for Myalgic encephalomyelitis or Chronic Fatigue syndrome, as it’s more commonly known. The first thought that comes to mind is how an illness of such gravity was came to be known as a fatigue illness. This illness causes 25% of it’s sufferers to be housebound or bedbound and has lower quality of life scores than heart disease and other illnesses which many perceive as more seriousness.

It is more than just being tired. It’s more than just fatigue.

It’s feeling as though your bodies shutting down on you, easy muscle fatigability, i.e just getting dressed or hair washing is almost impossible even though it’s a task you do every day so it’s not a result of deconditioning.

We’re not just lazy and we’re not just depressed although I understand that from the outside it looks that way. May of us are perfectionists, many of us have ignored the signals our body has given us to slow down until it just gives up.

We’re not lucky to not have to work or to have all this free time.  With an illness that makes even watching TV difficult all of this free time quickly becomes mind-numbingly boring and painfully exhausting. We have all of this time to rest, but the rest never feels particularly restful, it feels effortful and exhausting to do anything but sleep but hilariously enough many of us have difficulties falling asleep.

I find I often get myself too weak to do anything but not able to drop off to sleep. I find myself stuck in the in-between. And yes I will often have some form of background noise on to keep me company, but often it is just that. Background noise. Some ME/CFS warriors can’t even manage that.

This is an illness that is grossly misunderstood, underfunded, under-taught. It often takes years to get a diagnosis and then the medical profession fails to provide adequate management plans, with specialist centres also being grossly underfunded or completely misunderstanding the illness, seeming to think that if you exercise and think happy thoughts that’s it, problem solved.

If your lucky, you’ll get both.

This is an illness that causes a myriad of symptoms, from heart rate dysfunction and difficulty breathing to debilitating brain fog to visual disturbances. Migraines, muscle weakness, bladder and bowl dysfunction, nausea. There are over 60 different symptoms associated with this illness.

And all the medical community have to call it is fatigue.

Of course not all of these symptoms will affect everyone, and each person is affected differently. But I think that’s another misconception with the illness. Some with ME/CFS can work, run, dance, cook, clean, socialise. Some can study but can’t exercise, clean or have much of a social life. Some can work from home, some can work out of the house. Others can’t work atall yet are still able to retain some elements of what it means to have quality  of life, albeit minor. And then the very worst of us are stuck in dark rooms, reliant on feeding tubes, unable to tolerate any noise, human interaction or otherwise.

Quite literally forgotten about, missing from the world.

After 5 years of this illness I’ve ranged from being very mildly affected to being moderate/severe and everywhere in between. I can also say that this illness has been one of the hardest things I’ve had to go through in my life – purely because it takes so much away and makes everything so difficult. But it has also taught me a lot. A lot about myself, about the world we live in, about other people and how to perceive the world. In a weird way, I’m thankful for it, although if you were to pass me a cure I’d jump on it.

ME/CFS needs more awareness. In it’s very nature and severity many of us cannot do enough to raise such awareness. We need allies, we need people to understand. Although it’s impossible to understand until it’s you… So maybe understanding is not the right word- rather knowledge, care, enough to ask the right questions and provide the right support. Enough interest to increase funding, improve research efforts and improve ME/CFS clinics both within the NHS and around the world.

 

Travelling with a chronic illness 2.0

 


Ask me now if I’d do it all again and I’d say yes! I’d do it again in a heartbeat.

Recently I’ve returned from a summer school to Colombia with my university. This involved a LOT of firsts. Flying alone for the first time, flying long haul for the first time, first time on a plane since developing ME as well as first time on a plane since I had a cyst rupture on my right ovary in an airport at 14. (Yes that experience traumatised me a little).

Now of course this wasn’t all smooth sailing. It didn’t even start as smooth sailing considering I woke up with a paralysed arm on the day I flew out and had to sit down to get dressed it’s some minor miracle I made it at all and without use of wheelchair assistance at the airports because I am far too stubborn for my own good.

The flight itself was better than expected. I thought I would get bored, considering the first plane was a 9 hour flight and the second one 3 hours. The reality was so much stress and adrenaline went into getting these flights that I spent much of that time dozing. Although I did manage to get the reading for our first lecture done (Only reading I did all trip) and watch Love Simon. So boredom wasn’t an issue. Pain on the other hand was. I was getting severe endometriosis related pain in my lower left back as well as severe pain in my lower left leg. And if that wasn’t enough my left collar bone decided it would be fun to act up. As our first flight was delayed by an hour it meant we had barely enough time to get to our connecting flight, this meant a hurried walk through the airport praying we’d make the plane on time and trying to keep our stress to a minimum. This was where fatigue was an issue – as my heart had been above 100 all day due to possible POTS and a confirmed diagnosis of CFS I was really struggling once I got off my first flight, despite spending a large portion of it dozing. I was honest about this, which was a step up from usual however persisted in the fast walking despite every inch of my body was screaming against it. I was fighting to keep my legs moving, I was lightheaded and started getting severe chest pain but I didn’t want to cause the rest of the group to miss the flight because I was slowing them down.

Fortunately we made it to Bogota, Columbia on our scheduled flights and made it to our accommodation. After having a shower, I went straight to bed.

Lesson 1: Get the wheelchair assistance – it will make the journey more comfortable and less stressful if you have tight connections which leave you sprinting across the airport. It would also be good for reducing payback and allowing you to get more out of your trip!

Fast-forward to 7 hours later, I woke up the next day feeling nauseous and feverish and genuinely thought I’d caught something off the plane. Go into the bathroom, look in the mirror and realise I have an autoimmune rash. (Which is always slightly terrifying as someone with no known autoimmune condition.) But obviously being me, I couldn’t say I needed the day to rest. I get restless being stuck in a room unless I am legitimately dead, especially in an unfamiliar environment. So I went out with everyone, had breakfast and a few of us walked around the city for a few hours. Which obviously was great for my pain. Again, when I was asked, I was honest and said I was getting a lot of pain but also being me, said I would be fine unless everyone else wanted to go back. We headed back, and I was told to rest, moaned a little, and then actually crashed for 5 hours upon getting back to my room. Went out for dinner feeling refreshed although was fading again towards the end and that was that.

Lesson 2: Take the first full day to rest! Don’t do what I did and walk over 10,000 steps when you never do that at home due to the pain and fatigue it causes. You will pay for it later on and you don’t want that.

So then we have our second day. Which was the first day of timetabled activities so obviously perfectionistic side of Hannah kicked in. There was no way I could miss that and in my mind I had to do everything. (Which obviously wasn’t true, throughout this entire trip it has been made expressly clear multiple times a day that everyone else would be okay with me resting if I needed to.) But Hannah is Hannah, and although I’d had very minimal sleep due to being in pain (Yay ovarian cyst ruptures and all the walking being hard on my legs) I made it my mission to manage the full day despite not feeling atall well. It wasn’t like I was in a crash or anything.

Lesson 3: REST! Listen to your body. If you had a cyst rupture on your ovary or whatever is causing you to feel bad let your body have at the very least a morning to recover. (Normally give myself atleast a day when I’m not away)

I made it through the day, and even participated in a salsa lesson which I was very much told off for in a “well done but please don’t push yourself too far” way. It was fair to say that once the day was over and we got into the taxi I was well and truly done for. My endometriosis pain was really acting up in a contraction like pain way and once I got back to my room I managed to dislocate my shoulder by writhing in pain. (My pesky shoulders will feature a lot in this post).

And so, from 6pm to 6am, only getting out of bed to take a shower our third day starts. Apparently, I still had a lot of endometriosis pain, which is always fun because max strength prescription co-codomal combined with an overdose of ibuprofen won’t touch that. But we persist, despite being told resting was okay if that’s what I wanted to do. I stayed off of the coffee bcause I think it was coffee that really did me in the day prior. So we stuck with a green juice which did wonders for my endo pain.
The juice in Columbia is all freshly made so it’s incredible!

So you would think, endometriosis pain solved, I would manage the whole day. Well you and I were both wrong. Which was sad as the rest of the group were going up Monseratte which I really wanted to do. But my body had other plans. I was feeling lightheaded, shaky and my heart was doing weird things. I would have tried to power through it if it wasn’t for my brain completely going to the point where I didn’t even feel present in the room we were in. I knew I was having some sort of crash. If I have POTS it can be put down with that as on this occasion I lacked the extreme muscle weakness that tends to come with ME/CFS. So I didn’t even make it until lunch, but after forcing down various forms of electrolyte drinks/powders and eating salty snacks I was back in full force by the next day. (Well as much full force as is possible for me)

Lesson 4: If you have POTS or just have similar issues as a result of another illness keep salty snacks and electrolytes on you because sometimes they do actually help and it will save you from having to get other people to go down to the shop for you when your too unwell to do so yourself.

So it is now our 4th day! And we managed! Maybe we pushed too much considering nausea, and severe pain but at the end of the day, I would rather push myself a little too much than not quite enough. I had to sit down on the pavement whilst waiting for the taxi has my heart rate went crazy high and I knew at this point I had to make it through the rest of the day. In the afternoon we went to a botanical gardens which meant lots of standing and walking on some severely painful legs, which I managed but god knows how. Especially considering I had been told if I needed to sit down I could. (Clearly being given the option to rest doesn’t make me weak and pathetic)

Lesson 5: If your honest about how your feeling you may be surprised by how people try to help/accommodate you.

Now day 5 is what I would call the start of the major crash. (This was definitely ME/CFS) I woke up feeling okay. (Well in my book). But at around 10am It just hit me like a ton of bricks and although I managed to stay for the rest of the lecture and went back at lunch I knew when I was standing in the lift on the way back up to my room that I had really gone and done it. For those of you who don’t have ME, a bad crash is so bad that you can barley lift up a bottle of water and lift up your head to drink said water. It’s having to crawl to get to the loo because you can’t stand up for long enough. Not fun.
But idiot here did things the next afternoon/evening as she was getting to the bored and restless stage of the crash.

Lesson 6: If you have a bad CFS crash don’t rush back into trying to keep up with your able bodied counterparts.

So I spent the weekend and the Monday stuck in bed, barley conscious, barley able to eat or drink due to severe head and face pain as well as muscle weakness and barley able to get myself from my bed to my bathroom.

But I to some extent recovered and was back to managing a full day of things the next day. Although I did collapse in the toilets after lunch. Fortunately I was able to get back up and pretend nothing had happened but it was still slightly terrifying.

Lesson 7: If you collapse/pass out/fall bring your phone with you EVERYWHERE. I was lucky I could get myself up that time but if I couldn’t I would have had to wait for someone to find me because I left my phone in the classroom.

And so Wednesday came, with more endometriosis pain (Think my uterus is slightly jealous that CFS has been getting all the attention.) Again I only managed a half day, but felt dreadful with CFS less than half way through the morning, however it was so much fun that I had to stay. Now obviously I then spent the rest of the day, in bed, in the dark feeling super nauseous, unable to see, with a really bad migraine. But it was worth it!

Lesson 8: sometimes you need to have fun! Even if physically you feel dreadful!

With a lack of better judgement and despite being told to rest I managed to make it through Thursday. This was out second to last day in such a beautiful country and by this point I just needed to have fun and make the most of it rather than look after my health. I slept in all 3 of the hour long taxi journeys that day, and my right ovary started acting up a little more than it had been in the 2 days prior but I managed and it was definitely worth it for the post it notes in the 3M goodie bag. (I’m such a stationary whore) After going back and starting packing, which meant enduring more bad right ovary pain and a subluxed shoulder I even managed to go out and look at some pretty lights for around an hour before crashing in bed till the next morning.

Lesson 9: We’re going to reinforce that sometimes you’ve just gotta have fun message!

So obviously felt awful come our final full day. Endometriosis was definitely jealous at this point seeing as I woke up, unable to move, crying from pain and nausea. Even had to send a message to say I might not be able to make it down because Endo was that jealous. But being me I did and somehow made it through the morning despite being very bitchy and absent as my entire body was hurting so much. There were times when I was asked if I was okay and all I could do was nod or whimper because endometriosis really knows how to get the better of me. Submitted to being taken back to the accommodation just before lunch, was not feeling remotely well enough to endure pain and people for any longer by this point. Layed down, which helped ease my endometriosis pain although nothing else and basically napped for a good 5 hours before going down for our final dinner together.

Lesson 10: Sometimes pain gets the better of us all. Superwoman or not. Giving in does not make you weak. Giving in means your listening to your body, accepting your reality and that requires an incredible amount of strength.

And here we come to our flight home. Which was obviously not smooth sailing because severe pain, endometriosis was definitely threatening a major flare up and still is and it became my mission to make all my flights on time so I could get home before the stabbing vaginal and rectal pains and the burning stabbing bladder pains and all the rest of the taboo joy that comes with endometriosis. It was about the point that I had to stop myself from crying/screaming in pain in the plane toilets over peeing that I realised that this is going to happen at some point. And I did. I made all my planes, dozed for most of it bcause fatigue, had to run more than I’ve ran in atleast a year to make my last flight as due to a delay I had less than an hour to make the connection. But I managed and I’m now home safe and sound. Can’t tolerate having my curtains open and sleeping more than I’m not but happy with how my body is dealing with this because it could be a lot worse!

Lesson 11: Avengers: Infinity war is incredible for pain distraction! Especially if you like fangirling. (couldn’t follow it because brain fog but enjoyed the fangirling.)

Lesson 12: Going to reinforce the wheelchair assistance thing so you don’t have to fight your body to run up escalators when you find walking up steps difficult enough.