May 12th was fibromyalgia awareness day. May is also fibromyalgia awareness month so I thought I should write a lil something to raise awareness. Yes I have three chronic illnesses with the same awareness month.
Fibromyalgia is a widespread chronic pain condition which causes pain all over the body. This is generally nerve pain and is often sharp, electric shock like burning pain. I find mine can radiate around my body so much so that I am unsure what part hurts the worst. Or it will target a specific part of my body like my lower left leg and stay there, leaving me unable to walk normally.
Fibromyalgia often causes tender points and previously this was used as diagnosis. I don’t often get tender points, other than in my lower legs, not that I’ve noticed anyway and I’ve never had a full tenderpoint examination. These tender points mean some sufferers find that they can’t bear their own clothes without causing more pain. Although I don’t have tender points as such my sensitivity to pain has increased. I never used to feel blood tests or vaccinations and now “sharp scratch” feels like a lot more than a sharp scratch.
Fibromyalgia also causes morning stiffness and unlike ME/CFS which is a very similar illness can be managed through exercises. (Low impact exercise like swimming, Pilates, walking etc.) As I have both I find gentle movement and stretching can oftentimes help my pain, especially in the moment but there’s a danger of doing too much and then getting payback.
People with fibromyalgia often get migraines, suffer from IBS like symptoms, have numbness and pins and needles, fatigue, brain fog, TMJ, bladder issues, in females increased period pain. On that note there is a link between endometriosis and fibromyalgia, or atleast seems to be.
I know many women who have both and I myself am suspected to have both and a doctor has actually said to me before I got my fibro diagnosis that the increased widespread pain I was feeling was likely due to my body being in so much pain with gyne stuff for so long.
It causes insomnia, which for a fatigued population is really not fun. People without sleep issues probably think if we were lacking that much energy we could just sleep all day.
But fatigue and sleepiness are very different things and sometimes our symptoms are overwhelming that it is simply impossible to get to sleep.
It’s common for people to mistake it as a psychosomatic but although fibro can be triggered my emotional trauma it is not psychosomatic. We just don’t have a biomarker. It’s a diagnoses of exclusion although many people get fibro diagnoses and later find they actually had something else.
It’s also common for people to ignore the spectrum and think just because one person can do an active job we can all do active jobs or we can all work at all. This isn’t true. It’s so complex and varied, every person with fibro is different and some of us have access to effective pain control others of us don’t.
Ibuprofen and paracetamol may help some people but it does nothing for my symptoms. I take the maximum dose of gabapentin but also use heat ice, heat cream, freeze gel, spiky balls and self massages.
Pain management is a cocktail of things. It’s also very much trial and error. Managing the other symptoms can be even harder, with doctors often unable to provide useful treatments the cost often falls upon us to make often expensive lifestyle changes which will come to no surprise as often unaffordable, especially if relying on benefits.
Fibro has no rhyme or reason and is almost impossible to understand until you get it but I hope this has given you all some sort of insight.
Sleep. What an interesting and topical topic. Seeing as sleep is essential for the functioning of the immune system and many people are struggling to sleep right now because of anxiety associated with the pandemic, I figured I should write about sleep and how to help with sleep as someone with chronic illness.
I feel like us spoonies struggle with sleep in two different ways. We either sleep too much (hypersomnia) or just cannot sleep (insomnia). Personally I struggle to stick to a normal 9-5 working sleeping pattern due to pain and nausea and because my ME seems to like the hours from 9pm onwards more and hates early morning rising. Many times I’ve gone into work on 4 hours sleep or less. I can easily sleep 10+ hours a night and have naps throughout the day when I’m in a flare. So I guess I go both ways…
Sleep is essential and not having enough of it can make it that much harder to get through the day or make us hyper tired and delerious and then crash later. So if your in the camp that is struggling to get to sleep at night or struggling to get to sleep early enough because your body clock is just against that 9-5 life then here’s a few tips.
Have a wind down routine Although some people can just switch off and yeah I can sometimes, most people can’t. Be it having a hot bath, doing some yoga, reading a book, watching some TV or a combination of the above a wind down routine is essential for a good nights sleep.
Try to go to bed and get up at the same time every day. If you work I’m sure you’ll relate to not sleeping great on a Sunday night because you slept in over the weekend. Going to bed and getting up at the same time can have a demonstrable impact on your sleep.
Sleep tea/night tea can help. I drink the Pukka brand of night tea.
Don’t stress about not being able to get to sleep. For some it helps to get up and do something and for others it doesn’t.
If you can, spend your day somewhere other than your bed, and ideally your bedroom.
If you have night meds to take that may help you sleep take them in good time. This does two things, helps you fall asleep on time and means you feel less drowsy in the morning.
I listen to podcasts/audio books to go to sleep, I find this helps occupy my brain whilst I’m trying to sleep.
Putting lavender oil on your pillowcase is known to help with sleep
Try to limit your caffeine intake, especially past early afternoon!
Finally, if you struggle with sleep because of pain try putting pillows under in-between different body parts (For example in-between your legs)
I hope this has proven helpful, there are many other tips and tricks floating around but I wanted to keep it to 10. What helps you sleep?
It’s time for another week in the life. I’m definitely considering two posts a week so I can do more of these but still write the awareness raising, life lesson and inspirational posts.
Anyway lets begin.
Monday was a work day. That 9-5 life. The cases were certainly better than they had been over the last few weeks but not great so I got 22 grants. Not enough but I’m not defining myself by my work stats or any other type of grade or number. 22 is so much better than the 10 I’d been scraping! I went home after work, ate food and tried to work on a family specific training contract application.
Tuesday I started shadowing some of the harder cases although I don’t think I quite braved taking the mouse myself then! The “red cases” like the red boulder problems I’d love to be stable on by the end of 2020 are such a huge step up! Lots of cognitive power and stress and disappointment. But I definitely appreciated a chance to learn something new and to give my wrists and fingers a break from standard desk based tasks as my joints have been struggling this week. I climbed in the evening and not gonna lie it wasn’t the best session and it was hard to not feel deflated but I did what I said I would and took it easy! I flashed the new set V1s and 2-3s of the day and started projecting some “swirly’s” which I feel in my soul so hopefully I’ll have a chance to get back to them. I also did an advanced footwork class and did my first ever roof move (on a v7 to practice heel hooks). I also very much realised my core needs work and that is part of why I’m still struggling with overhangs despite my technique on them improving. But hey, after being largely bed bound for so long what can I expect?
Wednesday, I was running on not much sleep. I’ve been struggling with sleep this week. With a combination of nausea, pain and noise from the pub next door it has been hard! Anywho. I felt super ill when I woke up in the morning and the coughing fit I had caused my right ovary to act up for the rest of the day. However my energy improved throughout the day and despite my joints feeling dreadful I went climbing (yes again). There’s a womens group on, on a Wednesday night which I like going to as the people are nice, most of them are better than be and give me useful tips which allow me to be the best me and it gets me trying new things on the wall without feeling silly. This Wednesday especially was incredible. It was quite chill, we spent a while just catching up and chatting before warming up. There were some new people there and it was the first session after Christmas so a lot to catch up on! Not gonna lie, I didn’t do the 10 squat jumps we were meant to as my body just couldn’t. I would have collapsed. (Just a warning sign to the ME flare that later ensued. I accomplished two v2-3s that I had been struggling with, due to fear more than anything else and realised that actually if I commit, I can do those big moves. They look scarier than they feel! I also resent a v2-3 in a more technical and much easier way as well as getting another v3-4 with some help and support from the more experienced members of the group. That’s what? 7 v3-4 problems I’ve now accomplished. Mostly slabby but it’s start to reaching my goals despite chronic illness. My muscles were struggling hard on Wednesday. Those little legs of mine were just not okay. I think this is why I fell of a V1 that I have yet to conquer (at a low height) and partially dislocated my elbow because I was a tit and put my arm down. I (yes am a tit) and continued climbing on it, so to this day. My elbow is still not 100%. But anywho. Good session and I came out of it feeling so positive and uplifted and it just reminded me of why I love this sport so so much.
Thursday was another learning at work day. I think it was Thursday that I really started to find my confidence with these red cases. In the afternoon the ME flare ensued so I got home and binged spinning out, curled up on the sofa. I couldn’t sleep that night cause the pressure in the back of my head and the dizziness so another not enough sleep night but such is life.
Friday was an interesting one. Even more confidence on those reds although I was feeling so unwell in the afternoon that I was just like “no. I can’t.” Honestly the pressure in the back of my head and the dizziness resulting meant that I was close to going home sick because I had visions of another car park incident. Hilariously enough. I didn’t and then (more Hannah may or may not be a tit) I went climbing. Because of my elbow I took myself to awesome walls as being on an auto belay would minimise the chances of making it worse (no high impact falls. Just low impact collapsing in a heap when it gets you down). This was my first time on a rope and colourful holds for 5 years or so. MADNESS. But it was great (although exhausting). I think I just completely forgot how to rope climb at the beginning of the session so I was using my arms too much which lead to v quick “shit I’m done”. Nevertheless, I ended up staying for two hours and I don’t think I’ve ever worked that hard. I’m not exactly sore from it but at the time it felt harder than any climbing I’ve done for years! I flashed numerous 5s. There were 2 I couldn’t do, but I think because I was so tired by the time I tried them. I also on sighted a 6a and 6a+. For a first rope session in a while I think that’s something to be proud of. I very sloppily got up most of a 6b, that I probably could have done in two parts but I tried numerous times and got more solid at what I could do however couldn’t find a way around my lack of quad strength and the fact that I couldn’t push to much on the wall with my right arm due to my elbow. If I go back before a reset it’s a project I’m definitely coming back to. I also tried two 6b+s which I know I can do all the moves of in my soul but stamina and the unique difficulties I have with balance, struggling to feel my hands and feet on the wall as well as stability and power meant they just were not happening. I for whatever reason undercrimped? Is that a thing. I realised today that maybe that hold was meant for a toe hook so might try that if I go back to it. It was a good session but bloody exhausting. I am definitely a boulderer. I don’t know when that conversion happened. (Think I could also be a lead climber tho cause my issue with top rope is the rope gets in your way sometimes!) I realised if I am going to do the whole competitive paraclimbing thing there is a lot of work to do! Although it probably is better to compete this year as a practice run for when I’m hopefully stronger and have a chance of doing well so…. paraclimbing nationals at the end of the feb may indeed happen.
Saturday was HAMILTON! It was incredible. I mean it’s Hamilton of course it was. I really liked the Eliza who was on (don’t know whose cast right now in the west end soz). I mean I literally cried at burn. And then the tears just continued. If you know, You know. I also really loved Jefferson! He was great fun. And King George always is. My collarbones wearnt’t in place all day and my neck was feeling unstable but it was so worth it! Isn’t Hamilton always?
Today, I finished spinning out and asides from trying to make sure I have semi order in my flat I’m really trying to rest. I can barely stand up so not hard. But also is.
I hope you all had a good week! I will be back with another post next week.
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.
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.
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!
Another day, another blog post – I definitely have a creative muse right now. Today, I am going to write about something I would like to call productivity culture.
I feel as though in todays day and age productivity is so much more important than it was in previous generations. Maybe this is because of the internet, specifically social media which gives us access to so many people who previously we would have seldom come across.
Social media is full of those who build their platform from their business, their studying, their bullet journals, it is also full of a range of other stories, which when taken the wrong way or read in the wrong mindset can put the rest of us to shame. These ultra-productive people have upped the anti for what it means to be successful, to be productive, to be trying your best.
And obviously that’s not true, success is relative and the rational part of me knows that success is relative, and that everything happens for a reason. I also believe that a lot of the time these online personality’s are just inspirational and nothing more – they certainty don’t intend for harm to come from it. I was studytubers, follow studygrammers myself. I hold nothing against the concept or them as people.
But, I do know that I sometimes have to step back, and there have certainly been times when I have been left feeling like I’m somehow not good enough because I’m not ultra-productice or ultra-successful in life. This brings us to a deeper problem. For some teenagers and young adults, just desperate to be successful, for anxious minds this can cause harm. It can lead to the belief that you have to be doing something worthwhile at every waking second of every day. That you have to sacrifice your sleep, your downtime to being constantly busy.
Busy is the word that brings me to belief that this culture is also heavily represented outside of social media, in certain industries. In law, medicine and academia to name a few. And it can certainly be represented by that family friend everyone has who is doing all the things and puts you to shame. Makes you feel like your not doing enough to be successful in life.
Your not doing enough worthwhile activity. You feel bad for spending maybe a little too much time on social media, watching TV or watching YouTube. For not being successful enough. Currently, I’m unemployed. I’m waiting to hear back about a provisional job offer, and have one assessment centre and an interview lined up next week so it’s not like I’m not trying and I’m really trying to be okay with not being ultra-productive during my time off. And not being ultra successful.
Yes I’m being relatively productive (depending on your definition of the word) because the second I’m not distracted I realise just how bad my chronic pain is. Which is not good. I’m really trying to learn that comparison is the thief of joy and we do not all have to be ultra-productive and ultra-successful.
We are all unique and we all have different roles in this world, we are not all meant to be ultra-productive or successful and nor do we have to be.
It’s all relative. Everything is relative. And self care is so so soo important! Some need more of it than others.
It’s okay to let your body rest after running off adrenaline to get through exams. It’s okay. It’s okay if your barely managing your academic commitments, let alone anything else. And so long as your trying, it’s okay if your presently unemployed be it due to fate or otherwise.
We don’t all have to be ultra-productive all the time.
Be you, be unique and that’s enough.
If you just want to binge TV and do nothing else, that’s okay! If due to illness your unable to do much else that’s also okay!
Listen to your body, your heart and your sole and don’t get caught up in comparing yourself to someone on the internet. If you feel your family or teachers expect to much of you, please don’t let it get to you too much.
And a final reminder – it is okay to rest! We do not have to have every second of our schedules filled out at all times!
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.
So, it’s the summer holidays. I should be getting myself out there, gaining valuable work experience and what not. But am I? No. And not that I haven’t tried. Despite not wanting to be a Lawyer, I have kidded myself enough times that I do and periodically applied for vacations schemes throughout the year. I have scrolled through job sites to try and find summer jobs that I can realistically get to without a car from home home, because I’m not interested in paying for summer halls and then having to work x amount of hours just to break even.
And there is just nothing, that I stand a chance of being physically capable of doing, that meets all of the above criteria and will allow for a 2 week holiday, give or take a few days for me to go to Columbia with my university at the end of July/beginning of August.
But that’s okay. Yes I could do with the money. But it’s okay to be doing nothing with my summer.
As some people might see it, or maybe that’s my perfectionistic over-achieving mindset seeing it like that and actually, no one really cares that I materially lack work experience. Because A) It’s not like I’ve never been employed and B) I have reasons for lacking work experience compared to some of my peers.
So, to make myself feel less bad about this 3 and a half months of rest. I’m calling it a mental health break.
The reality is, even i can push through my physical health issues enough to be reliable and do a good job, the need to be reliable and do a good job and constantly not feeling like I’m good enough would be detrimental to my mental health. It has been in previous employment situations.
The reality is, even if I only worked 16-20 hours a week, I would be worried of doing much outside work incase it made me too ill to do my job. Which would mean neglecting friends, family and the wonderful summer sun. Which would aggravate my depression. I’ve learnt this from doing my degree this year. I had to take EVERYTHING else out of my life and I ended up suicidal, self harming again, falling into a pit of despair, disappointing my family and losing two of my closest friends. I don’t want to be in that position again.
Not only that but I want to be physically strong enough to manage doing everything timetabled for Columbia. Which okay, even with pushing myself to the max, could be an unrealistic goal. But the best chance of me attaining this is to spend the next two months resting and trying to build up my muscle mass through gentle exercise so walking upstairs doesn’t make my legs feel weak anymore. So I can pack more than two items of clothing before my arms start to feel weak. I want to make the most of this wonderful opportunity that I’ve worked hard to get. And there’s nothing wrong with that. Even if I do feel my dad is looking down on me for “wasting money” on going on a trip abroad rather than doing some more useful work experience with my time.
Further along the line, I need to be mentally and physically strong enough to finish my degree. Third year is the toughest and most intense year of a degree there is. The perk, if I get my module requests in on time and have passed my exams, I’ll get to do 4 really exciting modules which I’m really enthusiastic about and looking forward to.
I’m going to admit. I haven’t really been physically or mentally strong enough this year. I’ve had to study from my bed most of the time and I’ve missed more lectures and seminars than I would like to admit. I’ve pushed myself to go in a state in which I know I shouldn’t be attending even more times.
At the end of the day. I’m giving myself my best chances of getting my degree. And okay, maybe in the long term this won’t fare well but that’s okay.
This most recent academic year I haven’t really had a chance to do what I really want to do. And I haven’t really had a chance to relax. Lesson 1, forced rest and relaxation are not the same. I haven’t had a chance to write fanfiction, use this blog as much as I would like. Indulge in TV, especially new series of things that require following. I haven’t read a book, just for the fun of it since last summer. And not because I’ve been off having the time of my life, I haven’t even been that social this year, because my health has prevented me.
Purely because my foggy brain and fatigue means I need to put way more time into my degree with way less energy to do the degree with. Which is also okay, because I love my degree, if I didn’t love my degree I wouldn’t still be doing it, I definitely wouldn’t have preserved through the past year of it.
So actually, I think I need this time. To just enjoy summer. To find myself again, to think about what I’m doing after my degree. Am I going to run off and do a psychology conversion, followed my a masters in forensic psychology? Am I going to go for the NHS policy and strategy grad scheme? Am I going to go into social work by doing one of the grad schemes available? Or maybe I’ll try and get my hands on some volunteering with vulnerable people and become a probation officer?
Or maybe neither of these are the path I will take, but that’s okay too. It’s okay to take time out. It’s okay to not know what I’m doing with my life and it’s okay to study law when I don’t want to be a lawyer or become an academic. This is my path in life and eventually, I’ll figure out where this is all going, where it’s all taking me.
Until then it’s time to ride the wave, remember it’s okay for me to be taking such an extended break from life. Because that’s what I need right now. A break. I need no pressure, and time to heal, both mentally and physically.
Sleep issues are something I’ve suffered with for years. More predominantly since I was around college age and stress got to me which added an extra layer to my sleep issues. When before it was just chronic pain and nausea affecting me.
I know sleep issues are something many adults suffer with, many adults moan about. Say “they haven’t been sleeping.” or “There’s not enough time.” or “They couldn’t get to sleep.” It is somewhat an epidemic. Quite possibly due to modern society. Modern technology and the expectation in some career paths to be 100% totally dedicated to your work and nothing else.
But sleep is essential for everything. And something that should be prioritised whenever possible. It can be frustrating when we can’t get to sleep and only have a maximum number of hours we could possibly get anyway. Especially for us spoonie’s who often suffer from fatigue regardless of getting enough sleep, yet also have the issue of not being able to sleep due to symptoms of our illnesses. It’s quite a difficult situation to be in.
I’m someone who has tried everything and found that although it doesn’t always work a must for me is to have some sort of sleep music or hypnosis to send me off. If not the slightest noise will disrupt and disturb me. And there can be a lot of noise at uni residences.
I’ve also found atleast a basic routine helps, trying to go to sleep not too early or not too late and if I end up being up a lot with a pain flair trying to get my sleep pattern back as soon as possible in order to catch up again is most sensible to reduce the effects of sleep deprivation which generally make me feel like I’ve been hit by a truck, or with some awful flu. Even if it’s 5-6 hours rather than 7-9.
I guess most non spoonies wouldn’t understand that. They may feel 5-6 hours is acceptable sleep, although not enough for optimal human health they can manage on that. Yet us spoonies have out bodies fighting against us anyway and often struggle to one extend or another with energy, especially if we try to live busy normal lives despite out illness so we need a minimum of enough sleep to manage well.