Lets Talk Migraines

I know Migraine awareness week was last week but lets face it every week should be awareness week so I thought the untimely post would still be a worthwhile one.

The classical migraine is an aura (usually some sort of visual disturbance) followed by a throbbing headache in one side of the head or the other (sometimes both) combined with nausea, vomiting and dizzyness. However migraines are a lot more dense and complex than this.

Personally I get a range of different types of migraines and symptoms from migraines/that end up causing migraines. Sometimes I get an aura which is either those spots of lights in your eye or a loss of peripheral or blurring of the entire vision in my left eye.

My migraines either come from neck issues and pressure at the base of the skull, over-exerting, not wearing my blue light glasses enough or hormones.

The hormonal ones are the most painful but normally they are just that. An agonising pain in the butt (or should I say head). These ones make me want to cut my head off. These migraines also come with the extreme light and sound sensitivity that often comes from migraines, along with that distracting at best and debilitating at worst nausea.

My day to day migraine however is a lot worse more varied irritatingly day to day and is often worse on days where the pressure in the back of my head is worse. If I am unable to manage that pressure before I get a migraine with ice, or laying flat on my back with my orthopedic pillow at regular intervals then it will often get worse and cause a migraine or bring on a worse one.

I get your regular nausea and vertigo like dizziness, but also some of my numbness and tingling may be attributed to migraines. Light sensitivity is a bitch, especially as I don’t have sunglasses that I’m confident in and it’s going into autumn and winter in the UK where people don’t wear sunglasses. I find I’m much more sensitive to sunlight than relatively small amounts of artificial light. There have been days/weeks/months where I haven’t been able to open my bedroom curtains fully. I struggle to watch movies on a screen without night mode on and without blue light glasses! Especially if it has lots of flashing, action or loud noises.

I’ll be fatigued but the symptoms will make sleeping almost impossible.

The symptoms cause unbelievably thick brain fog making every bit of cognitive function so much harder, if not impossible.

It’s not just a headache.

What’s your experience of migraines?

If I were to paint my pain

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.

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?

 

The contradictions in ME/CFS recovery

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

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

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

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

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

Coffee or no coffee?

Prescribed medication that may increase fatigue or not?

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

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

 

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.

 

When I say I’m tired…

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This is a difficult one to write but an important one in order to raise awareness for fatigue causing chronic and mental illnesses as your average muggle just does not understand what we mean when we say that we’re tired.

Let’s just start by getting our understanding of tiredness correct. Tiredness can be relived by sleep, rest or even a coffee. Tiredness may even be relieved by a cold shower in the morning or a nice morning run (or climb).

When I say I’m tired that’s not what I mean.

I mean I’m dizzy. My brain is just not doing anything for me, and I struggle to understand the simplest of things.

I mean that I’m getting an intense pressure in the back of my head and neck and that is making me dizzy. I am struggling to stay sitting up. Let alone using my brain and working or engaging in a conversation.

I mean I have a debilitating headache or I’m just getting sensory overload for no apparent reason so please shut the fuck up.

I mean that I am in so much pain that no amount of distraction is helping. I need to either go for a climb or just lay in bed with whatever heat/ice combination and some reruns of greys anatomy.

I’m not just tired I’m exhausted. My muscles feel week and heavy. I’m struggling to coordinate myself, I can’t feel my legs. I’m having random muscle twitches and seizure like shakes.

When I say I’m tired, I mean I’m so tired that even if I lie down I feel like I’m about to fall. I can’t tolerate using a pillow. I can be completely flat and still feel like I need to be laying down more.

I don’t just mean I’m tired.

I mean my body is done and it needs a break.

What do you mean when you say your tired?

On climbing and chronic illnesses

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I’m not sure if this is going to be a little bonus post this week or my first post of 2020. But I feel inspired so I’m gonna write it.

I’ve been climbing since I was 14 and at my peak I could do a 6c+ (font) which is a V5? Anyway I started as a top rope climber and did some regional competitions as well as a bit of leading before moving exclusively to bouldering in 2016. This was a big move because bouldering was my nemesis before hand because it was scary and I found equivalent grades felt impossible. It was also my first introduction to really steep terrain, which still to this day I am hopeless at although definitely improving. However, I also found something in it which was so rewarding. See I like a challenge. I also found it calming. A break from the stress of A-levels – which at the point I was behind on due to ME. And slowly but surely I got up to my peak bouldering grade being a V5.

Then life happened. I had a really horrendous endometriosis flare up which caused an ME/CFS relapse (doctors have actually said this) so I barley climbed for a year. Tried to get back into the sport at the beginning of my second year at university and I could still boulder a V3 with relatively little effort. I then ended up largely bedbound for two years and here we are now.

I have been climbing properly again for a month. Bouldering exclusively although once I get my stamina up and I have some more money I’ll go down to the local awesome walls and get myself on some autobelays to test out my stamina and maybe push the grades but we shall see. I’ve said in my previous post that I’m climbing at V1-V3 level – with V3 being my peak/if it suits me, I can probably do it. Since coming back I’ve had to focus a lot more on technique because I have no strength. Yet I’ve got myself up overhangs. I’ve worked and I’ve worked, and I’ve worked some more.

Not just on specific problems or techniques but also on thoughts towards myself. I’m something of a perfectionist. I am also someone who struggles with not being the best at everything. Now I was never the best at bouldering but not the point. Coming back means that I am very much the worst. Or not the worst but not great. I have had to accept that, and not beat myself up over it. We all have our own journeys and my journey is a comeback. A journey to hopefully coming back better. I know I lacked some technique, some old pictures of me make me cringe. It’s about building on that – growing and hopefully becoming physically stronger as well. I always say comparison is the thief of joy and slowly but surely, I am learning to not beat myself up because x can do that blue easy and I can’t even start. And that’s the same with everything. There’s a lot of potential comparison in life – with grades, with stats, with weight. And with a chronic illness it’s hard to believe you are enough and you are valid. But you are. If you know you’re trying your best then you are enough. (And that doesn’t mean killing yourself trying. It means listening to your body)

Since bouldering again – well today actually. I realised, and all the cogs in my brain finally clicked, that I can tell how my body is doing. Yes, I have climbed through extreme pain but it’s about knowing what and why. Is it likely to cause an injury or a flare up that just doesn’t make it worth it or not? With bouldering I am slowly learning when to push and when to not. Or I hope so! Today (well won’t be when this is uploaded) I had a not so great session. I didn’t see at much progression as I have been over the last few weeks and my body was struggling because HSD was interfering with my elbows meaning slots of slabs were out and ME/POTS were causing my legs to feel incredibly weak and me to question my hands ability to grip. I could feel that, and I knew. So instead of pushing it too much and stress I decided to see what I can do. I got up two V1s (allegedly) that are so not my style and I had been trying to do for weeks. I got up a V2/3 that I have been trying since last week and it was such a shock because although I had attempted to route read the whole thing at some point, when I did it I was so focused on this one move that I was struggling with that I kind of figured out the rest on the spot. I also did a V2 on some steep terrain and did so effortlessly once I got the first move. I spent the rest of my session trying some things and seeing how far I could get. I breast planted into the wall (yes quite literally) and got further up some of the more difficult v2/3s for me and further up a v3/4 so all in all not a waste of time.

I’m very bad at assessing how ill I am based on symptoms because I could feel dreadful and have it only be cognitive screen scaring fatigue or it could be actual fatigue. I don’t know the difference. Being able to climb means my body has that time to give me subtle signs, telling me when it’s not coping with life.

Since coming back I have learnt to not measure my progress by grades or colour of climb. But rather to measure it on the skills I’m developing. On my ability to deal with specific types of holds or parts of wall. I really want to improve my overhang work and eventually my roof work as I have always been useless at these things. I also want to be able to dyno although I tried dynoing something as someone told me too and actually got closer to the move by being static… In terms of specific holds I want to get more confident on volumes and slopers as these have always been points of low confidence with me and my old wall didn’t really have volumy climbs so I haven’t had much exposure.

It’s way more satisfying to measure progress in that way. The final thing I have learnt is to just try things. Even if they’re outside your current grade range or look a little scary, it doesn’t matter if your not able to top it – just getting yourself used to the different hold types and movement types is an important step in pushing those grades. The caveat here is be careful and don’t risk an injury. I know I can’t crimp anymore because I have no strength and my fingers are unstable as is. Instead of trying to kill my fingers I’ve been mindful. If my fingers start hurting, I ease up. If I really want to try that crimpy problem and the crimps are too much, I’ve been trying to find creative ways around them. Just trying things is fun and it’s also a good way to show progression. If you can get further up something marginally outside your grade range than you could the session before, that feels good. That’s the reward of bouldering.

As with the last post the pictures are old! But hoping to go for a family and closest friend sesh whilst I’m home for Christmas and I’ll be taking it easy but hopefully we’ll get some fresh pics!

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

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

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

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

And then life happens.

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

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

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

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

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

No.

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

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

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

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

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

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

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

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

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

 

 

Travelling with chronic illness pt 1

Stress,

That’s all I can say right now. Lots of stress, lots of organisation, lots of back and forth emails, phone calls, website requests, GP visits.

Lots of money being spent and mistakes being made which are stressful to correct.

It’s knowing your not well enough and your going to have to push yourself to your limits, but the trying to damage control by ensuring wheelchair assistance is in place at airports and ensuring you have enough of all your current prescriptions causes more stress than you need.

Travelling without a chronic illness is stressful. There’s so much too it! But with a chronic illness, especially as an adult where all this organisation needs to be done by you, for you. And it’s terrifying, especially as someone with telephone anxiety which is not ideal as an adult with a chronic illness who is about to embark on the trip of a lifetime.

It’s excessive packing lists, having to be selective over which suppliments/symptom relief methods are coming with you. Because you don’t have the space for everything.

It’s all the what if’s? Having to be extra secure in the fact that your travel insurance is everything you need it to be.

A lot of wanting to do everything and anything. Wanting to see it all, do it all, keep up with the rest of the group. But 50% will be a push, so you know 100% will land you in a hospital. Knowing that all though this will be the experience of a lifetime that sacrifices will have to be made. Be that in having to take more time to rest at night, or having to take weekends to rest. Whatever is necessary to keep me from actually passing out in public or ending up with paralysed limbs throughout the trip.  But those sacrifices hurting your heart, even before they happen. Because you feel like your missing out on some amazing experience.

To sum up. Before departure date, it’s a lot more stress and worry than there ordinarily should be or would be.