I have ME. When I say I have less energy than you I mean it at a cellular level.
My Mitochondria, that it the power house of the cell doesn’t do what yours does. It doesn’t produce energy the same way yours does.
You can get up, exercise for 2 hours, have a shower, work for a full day, some chores, walk the dog, read a book for fun all in one day,
That level of activity is something I dream about. To be able to sustain that without crashing and burning.
I lay on the floor to do some pilates based exercises and it drains me. So much so that getting off the floor is a struggle, if not impossible. My legs simply won’t.
You easily walk up the stairs. I walk slowly, clinging on to the banister. My legs feel weak and won’t move any faster even if I tried. Or I crawl. My legs not doing the stairs at all.
You can empty the dishwasher or hang the laundry quickly and without having to lie down after.
You go to bed and you wake up in the morning, maybe a bit groggy but you have a coffee and you can get on with the day.
I wake up in the morning, paralytically exhausted. Once I can move I’ll get up, have a coffee and a rest then try and get on with my day, fighting the need to nap for at least a couple of hours. My day is spaced out with intermittent rests and ice on the back of my head.
If you overdo it you feel quite tired so you take it easy and rest and you feel okay again.
I overdo it and my balance gets worse, I go into pre-syncope every time I stand up and may collapse just from trying to get to my own bathroom. My migraines get worse. My vision may get worse. My stomach may decide to stop digesting food. My legs, hands, feet and even face may go numb. My temperature regulation is worse than usual and my throat feels like like it’s being torn apart by razor blades. My light and noise sensitivity gets worse.
My body doesn’t produce energy in the same way yours does and it’s function is dependent on careful pacing, which is often better luck than judgement.
Okay, this one has been coming for a while because subtly discriminative job adverts are an issue of mine and sometimes less subtly.
Because finding a job with a disability is hard enough and in the UK the Equality Act 2010 is meant to prevent disability discrimination in the workplace – from the application stage.
I’m not going to get into a debate about whether it does this well enough or not but I am going to discuss some of the parts of job adverts I’ve seen that are somewhat discriminatory.
We are looking for a high energy individual – My condition causes fatigue but it doesn’t mean I can’t do the job well.
Must be able to drive – If the job doesn’t require significant travel and is in a place accessible by public transport why do I need to be able to drive? There are many reasons why someone with a disability wouldn’t be able drive and this exempts you from the job even if driving isn’t necessary to perform the job well.
Must be able to lift X amount – If it’s an office role requiring mainly desk based work it would usually be a reasonable adjustment to delegate the lifting part of the role to another member of the team
Must be physically fit – unless it’s a role that actually requires this I think this one is self-explanatory
Good health record
Physically and mentally healthy
Flexible – flexible in what sense? How flexible? This may also be discriminatory to women who often have more childcare needs than men. Yes we may be flexible but only within certain parameters.
We need to work with employers to ensure these phrases don’t crop up in job advertisements, recruiters and disabled candidates are aware of the range of adjustments that may be considered reasonable and that recruiter are open to recruiting disabled candidates and understand that we can be valuable members of the workforce.
I hope that when the next generation start applying for jobs they won’t face these barriers.
If I were to paint my pain I’d paint the pressure behind my eyes, the sharp headaches around them and the migraines above them. I would paint the back of my head, the pain and pressure from the base of my skull upwards. If I were to paint my pain I’d paint my jaw. Tiring from chewing and dislocating if I dare open it too far.
If I were to paint my pain I’d paint my neck as it gets increasingly sore, the longer I sit up. The grinding and pain that is more often arising from what I presume is “sleeping funny.”
I’d paint my collarbones. Especially my right one, which has been problematic since I ran into the side of a lorry.
I’d paint my shoulders. Struggling to carry a heavy backpack on my back, partially dislocating from trying to sleep or going into the freezer.
I’d paint my right elbow. The splintering pain I get through it from putting pressure on it or the ache from doing too many pushing movements.
I’d paint the burning, searing nerve pain in my lower arms. Tormenting me, keeping my up at night yet preventing me from doing anything useful. I’d paint my wrists, my fingers and thumbs. The instability causes pain but braces and constant taping is out of my budget.
I’d paint my chest. The period pain in my chest. The fibro pain. The subluxing ribs, sometimes just from sitting up.
My stomach. Not sure whether it’s hungry or nauseous. My kidneys, a pain beyond agonising that makes it hard to breathe.
I’d paint my lower abdomen riddled with all different types of pain arising from the urniary, gyne and gastro anatomy there.
I’d paint my back. The crushing feeling down my spine, the pain from my left SI joint and the agonizing ache in my lower back. I’d paint the nerve pain from my lower left back, right down to my lower left leg.
I’d paint my hips. Unstable, painful when I walk and climb. I’d paint my knees. Painful from doing to little yet subluxing from that spontaneous dance around my room or just standing up wrong. The ligiments in the back of my knee, tight and painful from past injury.
I’d paint my lower legs. The agonising nerve pain and bone pain. My ankles – unstable and easily damaged from impact and my toes – subluxing easily.
I’d paint my entire body. Chronic pain is relentless. It’s never ending and it’s difficult to explain. It’s real and physical pain.
Pacing is what you are told to do with most chronic illnesses that cause fatigue. Pace your activities so you feel as well as possible, your condition stabilises and hopefully start to get better. With ME this is basically all we have and it’s not enough. Most of us don’t really get any education by our medical professionals on how to pace and some get dangerous advice. Pacing is a word open to much ambiguity. When should I stop? How much should I do? When should I rest? Although on one hand that’s positive because rigid timings kill all joy and cause a lot of stress and anxiety it’s hard to know whether you are just “being lazy” as people often confuse ME/CFS with or “scared of activity” leading you to test your limits on a better day/week just to prove otherwise…
Because ME has the hallmark characteristic of Post Exertional Malaise or Post Exertional Neurological Exhaustion which tends to hit between 24-72 hours after an activity but can be longer if you are just running on adrenaline which happens to me all too often.
Yes there are warnings signs as such. For example me not being able to feel my legs properly and feeling like I’m going to collapse but that doesn’t necessarily mean I’ll get PEM from that activity.
Then the PEM hits, increased head pain, facial pressure, back of head pressure, dizziness, brain fog ect. Sometimes I recover fairly quickly. Other times it can take a month to start getting better.
If you start feeling better you think you can do something or should be making use of that time.
It’s hard to rest on a good day just to prevent consequences. If you’ve been ill for a while you want to go out seize the day, make up for that time lost being in bed, barely able to function.
And even if you think your doing this successfully the PEM can still come on. Either because you overestimated yourself or just because pacing isn’t a perfect science nor is it all in our control.
We could get a virus, it could be that time of the month, have a bad nights sleep because someone decides to start drilling at 8pm and doesn’t stop till midnight or symptoms could keep us awake. A stressful situation could arise.
And we go backwards even if we were pacing perfectly.
Sometimes I just say “Fuck it” to pacing.
Either because I want to live my life or I feel pressured because people with other chronic illnesses seem to just be able to push through unbelievable things and I’m just not trying enough.
Now this never ends well. Although I can push cognitive activity without getting too much worse if I’m laying down I can’t with physical activity.
When you want something so much it’s hard to not give it your all. It’s hard to remind yourself that ME is different to other chronic illnesses in that doing too much has often disastrous consequences.
Pacing is hard and impossible to do perfectly. I’ve had people tell me I need to pace better in order to work not understanding that my level of illness makes pacing and being in the office 5 days a week impossible.
Don’t tell us we should pace. We already know that.
And if we aren’t pacing I can reassure you that it’s because we really really really want something or need something or because we just want to spend time with loved ones.
The climbing gym is a lot like an actual gym. But with better music and a more social atmosphere. Nethertheless it can get quite intimidating climbing the lower grades when there’s burley men or women climbing grades above your max. (Mine is a V4 right now) Hilariously these are the people who are often the kindest. They may cheer you on when you’re attempting a difficult move or provide useful advice. Not in a nagging, one up on you way but because they recognise that everyone starts somewhere and collaboration is sometimes helpful.
There are then two types of people who are at around the same level as you. There’s the people you meet when your both working on the same problem. There’s a specific problem that I’ve been working on for two weeks and sent today during my lets send the most antistyle V1s in this gym sesh today. I got 4 of the 5 that I hadn’t yet sent. But hadn’t even attempted the 5th before today and I wasn’t feeling well and I got V3 to make up for it. So fair.
Anyway this STEEP problem I sent today. Nice holds and everything. I’ve had quite a few nice conversations whilst working on it. It seems no matter the height the crux is the same for everyone. An awkward across up, steep af move. It’s not hard. When you know how. But how is different for everyone. This is something I like about bouldering. I tend to boulder on my own – unless I go to a group coaching session or the women’s group at my wall as I find this a better way to get into the right headspace than if climbing with my closest friend or younger brothers.
I do like striking random conversations with people I’ve never met before. Especially when they’re nice people at your level and trying to do the same thing. It’s quite motivating and other people’s betas are always helpful if your just stuck.
It’s certainly one of the pro’s of climbing in a busy gym.
Then there’s the people who are at around your level and have already sent the problem your trying and just give unsolicited advice and not just one piece. One piece fine. Thanks. I’ll try your beta suggestion or think more about using that specific technique. I have no issue with one piece of unsolicited advice and will take it with open arms. I find it helpful even though often this hasn’t been the beta that worked it’s been nice to try new things.
My issue is those people who are not coaches and take it on themselves to try and coach you as if they have one up on you. No bbz. Focus on your own game. Of course, I’ll take your advice. I’ll think about it. I may even try your beta for that part of the problem and see what happens. But if it doesn’t work, I want the freedom to be able to stick to my own instincts without being insulted for it. These types of people don’t help when you already can get anxious about people watching you. I know it affects my game sometimes! We are all different people. We all have different bodies and different circumstances. Maybe my eventual beta for this final V1 (when I get it, if I get it) won’t be the most technical or the most graceful. And yes technique is so so so important and why I sent my first V4s in four years because I certainly can’t fall back on strength. It’s also why I sent that STEEP AF V1 I did today.
But and there is a big but. Asides from different bodies = different betas. You don’t need to use all the techniques in every single problem nor make an effort to do so. It’s about having a toolbox and unlocking what you need when you need.
I liken these people who give this sort of never ending one up on you kind of advice at the gym to people on social media or in life with/without chronic illness trying to give never ending advice about your chronic illness.
Those “have you tried yoga types.” or “My friend had ME and she had GET and got better.” I’m sure anyone reading this who has a chronic illness can come up with many others.
I think sometimes asides from a genuine desire to help advice like this be it in climbing or in health some people give advice like this due to an insecurity the person has and it makes sense. Coming from a very insecure person I get it. But it’s not cool and it can be really harmful (less so in climbing other than injury wise and getting more anxious and overwhelmed wise.) but in chronic illness life this sort of advice can be incredibly harmful. Both physically and mentally. It can leave you feeling deflated like your not trying enough to get better. At worst it can lead you to do something that causes a permanent deterioration.
AND THAT IS NOT COOL.
If you see yourself giving this type of advice, then please think before you speak. I get that you may think your helping or doing a good deed or are insecure or whatever but just think before you speak.
Let me tell you a story. A story of my life right now.
Way back in May I was given a provisional offer for a job up the other end of the country. Meaning living independently and working full time something I’m not really well enough to do so I need all the adjustments I can get. In the lead up to this becoming official I filled out many a form. One of these was a health questionnaire in which I detailed the adjustments I need to be able to do the job and why. I then attended an appointment which recommended said adjustments. However I still get an email asking me what adjustments I need and get a response saying I must apply to access for work AND that I can’t have flexible working allowance until successfully completing a period of probation.
And maybe these things are reasonable, but hear me out.
It takes 3 weeks to hear back from access to work. I start in 4. Had you told me before I had accepted my offer and started looking for houses then fine I get that adjustments cost employers money and they need that money back in some way. Access to work is a way to do that. BUT we know how poorly governmental disability help treats ME/CFS and associated conditions and guess what I have. ME/CFS and associated conditions. I applied for a blue badge when I was so poorly that I could barely walk around my house without finding myself on the floor and got rejected because that wasn’t enough. I wold never get PIP because I seem to function seemingly well yet I can’t keep a clean and tidy space, I can’t stand in the shower, I don’t shower, wash or brush my hair anywhere near as much as I should. I have to sit down to cook and have to keep it really basic as I struggle to coordinate and because brain fog is a barrier.
So what if I get rejected from access to work. And in their defence I didn’t say as much as maybe I should of but I quite seriously will not be able to do the job if I don’t have assistive tech and my ability to get into work may be too difficult too often if I don’t have a taxi allowance. Especially considering I’ll also have to cook, maintain a clean space, maintain a clean body and ideally try make some friends up there.
As for flexible working what about when my endo pain is so bad I can’t get into work until 10am or I partially dislocate my hip 2 minutes before I have to leave in order to get into work on time. Or when my ME is too bad to actually sit through work all day and produce quality work but I’m still able to work from home and will likely be more productive than if I was in the office. What about those periods where medical appointments are seemingly never ending because I need them. This is anticipated upon moving to a new part of the country. I can anticipate a fight to get gabapentin up there and as my main pain medication I wouldn’t be able to work at all without it. I wouldn’t be surprised if that requires an appointment for one. Not all GP surgery’s are open outside of 9-5 hours. All of these things could prevent me from passing probation but could be remedied by a flexible working allowance, yet I can’t have one until I’ve passed probation.
You see the issue! Why would I be faking something that is causing so much stress. Relocating is stressful for anyone. Relocating with a disability just amps up the stress because there’s so much else to consider. Do I need this extra stress no? So why on earth would I be faking?
I honestly think the more awareness raised for these illnesses the better. So a) people are less inclined to think faker but b) so these barriers are easier barriers to cross.
I hope someone can relate to this issue of the barriers upon barriers and extra stress. As always I’m grateful for being functional as I am but it certainly isn’t without challenge.
It’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.
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.
Having a chronic illness (or many) is hard, there’s no doubt about that. You basically become a full-time patient and very quickly realise you need to become better at advocating for yourself if you want professionals to treat you in the way that you deserve to be treated. Add the workload of a full-time degree course, and the whole social aspect of university then managing this becomes almost impossible. I’m going to share some tips that I’ve gained from my experiences and am trying to start applying to help me through my final 2 years.
Make sure your tutors are aware – this was something I was told to do by a friend. It was something I always knew I had to do, I just kept on putting it off. Probably because of how awkward and pathetic it felt. Especially considering the undiagnosed nature of my conditions back then and because I have endometriosis and the nature of that alone can generate some unwanted responses. But actually, I was shocked by the responses I got showing genuine care and concern. And just letting people know really reduces the stress and pressure. (Serves me right for having no faith in humanity).
If you can barely walk up the stairs without nearly passing out don’t attend your class – I still need to learn this, but once your in that state with fatigue nothing will go in. You’ll be spending your entire class trying to focus on just staying upright and not passing out. Nothing will make any sense and you’ll barely be able to keep up with note-taking. Most lectures are recorded now, it’s much more beneficial to stay at home in bed and go through the recording when you feel able.
Register with your universities disability service – still not done this because I’m not 100% sure I’m officially diagnosed (was told I probably have CFS? Doesn’t sound official.) But do, even if it initially causes stress to get the evidence and such because they can provide you with support throughout your studies.
Stay calm – you are doing the best you can. Maybe that’s not the brilliant first class marks you wish but you are fighting a hard battle no one knows. I promise you, you are doing enough, and being enough, even if you may get behind on or struggle with your work more than you would like.
If you need to take a year out, go part-time, or drop out all together then there is no shame in that – your degree is not the be all and end all future success and a rewarding, enjoyable life. There’s so much more to life than the qualifications you’ve gained and the calibre of the career you hold. There’s love, happiness, travel, family. Even the simple things, like waking up in the morning to see the sun shining, gentle walks in the aforementioned sun. There’s so much to life that doesn’t depend on your degree and at the end of the day, everyone will agree your health is far more important than an extra qualification.
Your gonna have to miss out on certain social activities and networking activities and that’s okay – Uni is when FOMO his you hard, or the guilt over not committing to your future career as you should be and attending all possible networking events. It’s okay to miss things. It’s okay not to go to the pub regularly or go clubbing. It’s okay to not be heavily involved in clubs and society’s and it’s okay to not attend networking events. Again your health is so much more important. And being sick doesn’t mean you’re destined to having no social life. It just means that you need a quieter social life. The best friends are the ones who understand that.
Take breaks – everyone needs study breaks. The brain can’t focus and absorb information when revising for more than an hour at a time. But this becomes even more important when you’re chronically ill, especially if you face fatigue and brain fog as a result of your illness. Yes, maybe you can “Push through”. But your time is going to be more effective and the information better absorbed if you take regular breaks. So take breaks when you feel the need and don’t feel guilty for needing more breaks than other people.
These are the tips I’ve come up with, if anyone else has others that may be helpful to people in this situation then, please comment and share.
It’s the worst thing when you open up to something about your chronic fatigue when there response is “I get tired too.”
“I get tired too.” Is nothing compared to what we feel.
Chronic fatigue is this relentless exhaustion. Like nothing you’ve ever felt before. It’s sleeping 9+ hours a night and still struggling to even complete basic tasks, like showering on the worst days. It’s being so fatigued that sitting up can feel like running a marathon and even watching the simplest of TV shows can be impossible to follow.
It’s struggling to walk even 10 minutes down the road without your legs feeling heavy, without feeling like you may just collapse from exhaustion right there in the middle of the street.
Breaks from chronic fatigue are short lived. You may feel good for a couple of hours, not even good. But better. Functional is more the term to use. And then you will be overwhelmed by it, excited by it and end up overdoing it. That overdoing it throws you straight back into that horrendous fatigue where it feels like you can’t even accomplish getting out of bed.
The worst part is the mental side. Mentally you want to do things, be productive. You have the drive but your body will just refuse to function to the capacity you want it to. There’s only so much pushing through that one person can do. Then there’s the guilt and the shame because everyone else around you is moving on. Making things of their lives. While your mostly stuck in bed, struggling through basic tasks. The shame hits you more on the good days, though. Despite the fact that one good day means nothing.
Being chronically fatigued is hard to manage. It can’t just be fixed by drinking coffee, exercising, eating right or getting adequate sleep. Managing chronic fatigue involves finding the right formula of treatments that work for you. That reduce your symptoms just that bit more for your life to become more normal again.