The month of both excitement and tears

June feels like it’s flown by. I think that’s because I just haven’t stopped and if I have stopped it’s been because I’ve been so unwell that I’ve been unable to even watch TV.

June started with me with my family and ended with me back up north due to flat stuff. Moving out is not fun. But we move (Literally in 4 weeks from the day this will be posted). I definitely miss being home. Although my chronic illnesses are a lot worse and my family just don’t get it I’m finding it’s too quiet working from home on my own. I’m bored, not because I don’t have enough to do but because I need that stimulation of people (and dogs around). But the health benefits are certainly worth it. Lots of exciting law things happened this month. I got a video interview for my dream law firm (and then got rejected but we move).

I also got an interview for a scholarship I need which is at the end of July. The pressure is on because I need it but I’m excited. I also took part in Legal Cheeks virtual vacation scheme which helped me massively in determining what I want for career and in providing me with a network.

I really hope my luck in terms of interviews continues and I get some more interviews for my outstanding applications. If I don’t that’s also fine as I’m aware many firms have paused recruitment and it’s a difficult year. There is always next year.

My stomach eased up after I moved back to my apartment as it’s meant I can eat more flexibly and in a way that works for my body. My bladder on the other hand. I’ve spent the last week on antibiotics for a UTI that may or may not be there. It’s helped reduce the spasms but it’s still causing significant problems, especially if I dare drink more than one cup of coffee a day. I am at the moment whilst I’m trying to pursue law, trying to work my full time job and trying to sort out a job for August (I’m resigning it will be official by the time this is published).

My mum and nan are putting an awful lot of pressure on me about my decision. I’m leaving because I’m simply not well enough. I need to get my health back so although I’m looking for an ideally part time role my interest in something full time is limited to something of the dream job category. It will only be 5 months come resigning until I start my LPC so I reason if nothing I’m well enough for is available I will manage living with my parents and worst comes to worst just doing general CV bolstering activities.

There’s only so long you can push yourself for and although I am getting out of this ME flare, I think, Maybe that’s the adrenaline speaking, I need to place myself in the best position to excel in my LPC and go on to have a long career in law. I also need to recondition and doing that whilst working isn’t going well right now.

Passing out when trying to sit up after a laying down workout isn’t fun!

So that was June! How was the month for you?

More things I’ve done due to brain fog

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As I’ve got a busy and stressful week I thought I’d make a quicker easier post and that is more brain fog stories as I have plenty of stupid brain fog moments.

  • Forgetting my brothers name. Not just confusing the two but going completely blank and having to settle for child and then getting told off by mum because “he has a name”. I know he has a name but my brain was so dead in that moment it couldn’t figure the name out.
  • Calling dad mum and vise versa – I did it twice in one evening a couple of weeks ago
  • How do I make a bowl of oats?
  • Completely misspelling words so they end up jumbles of letters
  • Writing the opposite of what you intended
  • Confusing words and names starting with similar letters
  • Leaving house keys in the front door
  • Forgetting to go to the toilet – yes I often wonder around wondering what I got up to do, go sit down again and then remember
  • Looking for ice packs in the kitchen draws instead of the freezer
  • Difficulty safely navigating streets and crossing roads when walking – my brain just struggles to process all the movement around me which is why I’ve not learnt to drive yet.

I hope these events show you the ridiculous things brain fog does to us multiple times a day and is somewhat relatable and helpful in helping everyone with brain fog feel less useless and alone!

May was a Mess but that’s okay

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I quite like doing these monthly reviews so I think I’ll continue them as much as possible.  But May was a not very fun month. Fun things happened but my body definitely took the sacrifice until I found the d-ribose and the adrenaline I’m in right now. Yes I’m aware harnessing the adrenaline isn’t good ME management advice but I do what I do.

The beginning of May actually feels like a decade away right now but I decided to commit to an ME awareness daily photo challenge on Instagram which I actually completed, like what? Everyone who knows me knows I get to about day 15 of these challenges and give up. But with a lot of pre-preparation and sometimes posting two or three days in one I managed. When I could dedicate the physical and cognitive energy to photo taking I really enjoyed expressing my creativity and posting different content. But I also liked  how I could go through a wealth of photos on facebook, google photos, my phone and post old content if I didn’t have the energy or muse. There is now a picture of 9 year old me in a tree on Instagram (Where else would I be?).

I also got to see my family again and I am loving being fed and my dog and my fingerboard and there being a tree I can climb in my nans back garden. It’s probably not safe as it’s probably taller than a bouldering wall (getting down was terrifying) but my brother climbs it all the time and I’m competitive. Yes even against a 14 year old because if he’s better than me at anything he endlessly rubs it in.  Also trees and doorframes are all I can climb right now so if I’m in the vicinity of a tree and feeling vaguely well enough I will.

But my health was not vibing in May. In all the ways.

I spent the month a really not fun gastro flare because my body was like “Hi your doing too much for me to have the energy to digest food.” The only reason I’ve kept weight on is because my family feed me and eat the typical unhealthy westernised diet so the calorie density has been higher, especially with my evening meal. I’m really hoping my stomach works this month because I’m done with the agonising all consuming nausea but also scared of gaining weight. I weigh the least I have since a bad gastro flare four years ago and I weirdly feel worse about my body than I did at Christmas when I was heavier. But such is life. I can’t do huge amounts about it when living with my family. If I wasn’t working I’d make separate dinners for myself more but I really don’t have spare energy to cook and wash up the cooking every day or walk to Tesco and back for fruit whenever. My nausea is something I really should see a doctor over as even though I can’t commit to one end of the country I could atleast get some anti-emetics. Over the counter and herbal remedies are of really limited effect right now and no I can’t concentrate on my job effectively if the all consuming nausea hits. But I also can’t concentrate if I’m hungry so I can’t really win.

My bladder also waged a bit of war on me, although that’s been going on since before lockdown I found it more noticeable when trying to work. I should really see a doctor about that actually as it’s been really painful over the last few months but COVID and not being committal over staying in one part of the country.  It’s also kind of scaring me because from my limited none medically trained knowledge it sounds like I’m having retention issues which is a common EDS comorbidity.

I still have an elbow injury even though that’s had a lot more rest (Should really do something about it) and my LCL is still injured even though when I got it checked out I was told a month. That was three months ago. I hate it when medical professionals underestimate injuries because of a high pain tolerance or maybe I just heal slowly because of my EDS. Everything else that got injured during the same heel hook is better now though!

Migraines, pressure in the back of my head, migraine like headaches that aren’t actual migraines and pain in the rest of my body has been a constant battle. Yes another thing I should consult the GP about but I have 99 problems and I don’t know which to prioritise.

I was finding myself on the floor multiple times a day, although that did reduce at the end of the month by starting D-ribose and getting back on another supplement that I think I probably was on at some point but stopped because I couldn’t afford. It’s very weird living in an abelist family who don’t even believe that is a thing, collapsing multiple times a day but never in their sight or rarely because adrenaline is a wonderful thing. It’s honestly even more hilarious when your younger brother has issues with you not emptying the dishwasher and your dad gets in on the “Why can you do X but not Y?”

Especially when you can’t explain because they don’t let you get a word in and lets face it no one will ever understand ME until they have ME. No one will ever understand that yes I can do this thing but this thing makes me very dizzy and I have to work after lunch so no I can’t do this thing right now. I can do this thing but it’s unsafe for me as I often can’t feel my feet and am dizzy so if I am able to walk down the stairs carrying a hoover down and then hoovering the mess I made after exerting a lot of energy before now is something I need help with.

I did the hoovering. Not the carrying.

I feel like able bodied people also don’t understand that we’re allowed to have fun. And I’m not blaming my brother for his “Why can you climb a tree but not empty the dishwasher.”  But it’s something I’ve come across my other people who are old enough to educate themselves and allow themselves to be educated.

May also ended in a bit of a mental health crisis. I won’t go into details of why or what but it was terrifying, especially as I had been doing really well. Honestly if I had records of my recent anxiety and depression questionnaires I could prove it. (I have to do them before each therapy session.) But seriously being worse mentally, even if only for two days than you have been for two years is terrifying.

So May was not great but hopefully June will be better. On one of the last days of the Month I was able to walk for 10 minutes without too much PEM. Still some PEM but less.

I may go down to one post a week in June. It’s certainly not felt right to make two posts this week with everything going on. I’ve been sharing resources and info #blacklivesmatter related over on my IG stories @spoonielivingfree which will likely continue but writing a blog post on the matter when I can only come from my own white privileged view isn’t something that’s felt right. We need to share voices from black people without putting pressure on them to educate us. I may however write some criminal justice/sentencing pieces if I can find the energy although I’m not sure whether they’ll be posted here or somewhere else.

That was a tangent. But yeah, I’d like to do two posts if I can but it’s not something I’ll pressure myself to do!

How was May for you?

 

 

 

 

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

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

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

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

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

Missing inside our homes.

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

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

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

None of these things are true.

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

The problem with Illness Bingos

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These bingos have been floating around Instagram for years, they’ve only recently popped back up into the stories of those whom I follow. Maybe due to pandemic caused boredom.

I find these bingos problematic, on many counts. Both the physical health ones and the mental health ones. This isn’t an attack on anyone I’ve seen doing them or anyone creating them because I’m sure many people don’t realise the issues with them. It’s just a harmless piece of fun right? Maybe… to you. But there are some real issues associated with them that I’d like to discuss.

With both the physical and mental health bingos create some sort of sick competition as to whose the sickest. Who can score the most with symptoms, treatments and comorbidities. There has been this toxic competition going round certain parts of the spoonie community before and it’s simply not okay. A place that many come to for support and a sense of community. A place that many people come to in order to feel less alone. It’s supposed to be a safe space and not a source of ones own illness imposter syndrome.

This can be even more damaging with the mental health bingos. It’s already common with mental illnesses for people to believe they’re not sick enough for treatment. These bingos make that worse.

Mental health bingos can also be hugely triggering, especially eating disorder bingos which often give ideas for behaviours that can be used or use numbers.

It hurts my heart to see these in the recovery community, where someone’s followers are often highly vulnerable.

The thing with Instagram and especially stories is that it’s hard to avoid taking in this information. Unless someone puts a trigger warning on before doing the bingo and you can then choose to click off of the story.

I know how hard that is when we have limited energy and when we may not realise the trigger as it doesn’t trigger us. But if you want to engage in these bingos I believe it’s the safest way to do so.

 

Painsomnia

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Painsomnia is a term used by people with chronic illness when they can’t sleep because they’re in pain. Either because they’ve ignored the pain so much throughout the day that at night it comes to the foreground or because they’re just having a bad pain day, week, month or year.

Painsomnia has been an affliction of mine as of late, which has not helped me keep a sleep schedule. Pain so bad that I can’t not be distracted. Pain so bad that I literally wanted to chop half my body off.

It can make us unable to get through the day because we’re just so damn tired. It can make us irritable and brain foggy. Especially if the painsomnia goes on for nights on end and we end up with long term sleep deprivation due to having to get up for work or school or just being woken up by those fucking seagulls outside. (Yes I now swear, especially about seagulls that I hear at every hour of the day) .

Painsomnia is a symptom that many healthy people aren’t aware of and they may think that you can’t be that tired if you can’t sleep.

Wrong.

Yes sometimes I will be able to sleep at an okay time despite pain, but that doesn’t mean the times I can’t I’m simply not tired enough. It’s all relative to how much pain I’m in, what medication I’m on and how long I’ve been taking those medications for.

But not always.

Painsomnia is a part of chronic illness that isn’t talked about to people outside the community much. And isn’t one that people outside the community necessarily think about when considering the impact chronic illnesses have on our ability to function daily.

But it has a huge impact. It can also contribute to the secondary depression that many people with chronic illness experience. Being awake in the daytime in pain day in day out can wear you down but at night. When the world is still. It can wear you down even more.

Do you experience painsomnia? How do you cope with it?

 

On ME flare ups, Pain flare ups and finding peace through them.

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I’m currently more ill than I’ve been in over a year. Both with pain relating to many a condition and fatigue. I’m feeling weak, my legs just don’t feel right on the ground and all of my will is going into stopping them from giving away.

I’m too dizzy to sit up and use my brain. Asleep more than I’m awake. My eyes stinging and burning. Either feeling really dry or constantly watering. I’m getting  daily migraines and the pressure in my head is oftentimes unbearable. Easily out of breath, from just going to the kitchen and getting some cereal. My extremities going numb as well as my legs.

My body alternates between high pain days and high fatigue days.

I know I need to take it easy to get out of it. But I can’t seem to get out of it. It’s been over three weeks since I started getting symptoms of COVID-19. The virus has pretty much gone but it was the final trigger for the flare that had been going on since the end of January. The flare that despite many a sick day I was only just coming out of.

Although I could rarely walk around my flat unaided when I had the virus. Whatever virus it was, and now I can which is a definite  improvement, I’m still sicker than I have been in over a year.

I’m used to pushing myself as a way of denying it to myself. Of climbing hard to ignore the illness, of showing up at work despite collapsing upon getting out of bed.

And I’ve now been blessed with a time where it’s easy to not. To try and listen to my body and rest. And that can take a lot! Emotionally and physically. It involves feeling all the fear, and sitting with it. Feeling that ounce of health returning and sitting with it. Not suddenly going for a run because you can sit up okay.

The ability to do little enough to get better from an ME flare requires strength. More strength than just pushing through the illness does. It involves coming to terms with the fact doing your best doesn’t mean running yourself to the ground. To the point that you have severe ME for life.

It involves dealing with whatever emotions come up with all the free time you have in which you can’t really do much. Even watch TV or read. I struggle to watch new TV shows and not easy to watch movies due to difficulty following them and can’t follow a book for much more than 10 minutes at a time. It can be quite scary.

Hence why I’ve traditionally boomed and busted unless I’ve had something more important like my degree to prioritise. (Which I did mostly from bed anyway…)

It takes a lot of strength to commit, to go all in. And you really need to find peace with the current you, regardless of your productivity or aesthetics. Or your ability to stay in touch with people.

As the years with this illness go on I’m getting better at that. And this pandemic and this flare has shown me how much better at it I am. At least whilst the world is at a standstill and people aren’t rushing as far ahead of me…

It’s not easy and it involves putting yourself first. Not just yourself now. But yourself in the future.

 

 

 

Trial and Error in Chronic Illness

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Living with chronic illness is hard for many a reason, one of these is the constant trial and error. Especially if you have one of those chronic illnesses that is poorly understood by the medical profession.

It’s trial and error with medications and with daily routines. What makes this trial and error so hard is that things change on a daily, if not hourly basis. Symptoms get better over time or get worse over time, and often fluctuate throughout the day. Symptoms can feel the same but your body may react completely differently to your actions on two separate occasions. Not only this but the trial and error of medications is mentally draining. Your body may finally settle down enough for you to start living your life again. You may think you’ve found your perfect cocktail of drugs and then you notice your symptoms increasing. You hope it’s just a flare but it gets worse. Suddenly your back and forth to the GP again, trying to find that perfect cocktail yet again. The potential side effects looming.

It takes time, it takes patience. There’s frustration. It’s exhausting.

Finding the perfect cocktail in the first place is exhausting, it’s frustrating and it is hard to go through without acquiring a mental breakdown.

Life with chronic illness is like going through the whole process again and again and again.

It’s like doing a science experiment on your own body.

However it also reminds you to never take anything for granted.

With a chronic illness you know your in it for the long haul. You know it could always get worse. You know symptoms you thought you’d said goodbye to could always come back.

The trial and error is exhausting, and it may make us snappy at times. But because of this we’re also very grateful people.

 

Lets change the dialogue (Stop the blame game)

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Put your hands up spoonies if you constantly find yourself blaming yourself for flare ups. Even if you know you did nothing wrong and it was just one of those things. Or maybe you did. Maybe you pushed it too far. But knowing our limits is hard and you to give yourself some grace.

I seem to constantly place the blame on myself and yes sometimes that is warrented. Like today for example. When I decided to go climbing unfuelled and under hydrated and fatigued super quick. Good sesh. Got my 6C proj but not the state to train in and that warrants blame. What doesn’t warrant blame is the little (or big) flare ups that likely would have happened anyway.

We need to stop this. Not only because of how it makes us look to other people, especially judgemental non-spoonies but also for our own mental wellbeing.

Flare ups are the nature of the beast. We could wrap ourselves up in cotton wool. We could live the perfect lifestyle, do all the yoga, drink all the celery juice and believe it or not they still happen. Life is so so hard to manage, especially if your young and ambitious. Trying to balance everything when you have multiple chronic illnesses is impossible.

Blaming yourself for flare ups is one way to end up very mentally ill and constantly hating yourself and thinking your not enough.

A) You are enough

B) We have enough to deal with without depression and anxiety, which most of us already have because pain changes the brain. (It has been scientifically proven).

So we need to change the dialogue and stop blaming ourselves for our flare ups. We’ll be much happier for it and maybe people will respect us more if we stop blaming ourselves.

 

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!