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?

The Things I do Because of my Chronic Illnesses That are Often Misread

Sorry it’s been a bit radio silence here lately! I’m struggling with my ME and relying on adrenaline, caffeine, sugar and sheer necessity to get through everything I do. With feeling so god damn awful and trying to just carry on I thought I’d share some things I do because of my chronic illness.

1. Resting my head on the table or my knee whilst I handwrite notes or an exam – I started doing this at school when I was 10 and I always got told off for it. But it was just more comfortable like that. I didn’t know why at the time but as my symptoms have got worse I have realised it’s a thing I do to try and alleviate dizziness and head pressure and just keep going. Fun fact head on desk is how I got through my Land Law and Trusts Law exams.

2. Never having my feet on the floor and finding all manner of awkward positions to sit in so my feet are at hip height – helps with fatigue and dizziness and is just more comfortable.

3. Leaning against whatever there is to lean on

4. Constantly moving around if asked to sit/stand in one place – shifting weight and finding different positions helps with pain.

5. Working from bed or the sofa – I’m often dizzy and suffering from pressure in my head or I’m nauseous and in a lot of pain. My bed and the sofa both mean I can alternate sitting and laying.

6. Picking up my phone far too often when I’m meant to be working but my ME is causing severe head pressure and I just can’t concentrate – Really trying to cut the phone addiction. This doesn’t help I just am not good at sitting, or laying and blankly staring at what I’m meant to be doing.

7. Walking slowly – I’m sorry, I simply can’t keep up due to my pain and fatigue. Please be understanding if we are out together and walk at a pace I am able to manage on that day.

8. Grabbing hold of walls or using them to guide me I often get dizzy and go into pre-syncope. When my vision blurs due to this or I just feel unsteady on my feet I often use the walls to help me navigate my way to the bathroom or wherever in the house it is I’m going.

9. Taking my time when changing position (i.e laying to sitting and sitting to standing) – head pressure and dizziness is a bitch and it definitely gets worse when I change position.

These are just some of the things I do due to my symptoms that people may misread.

What do you do because of your chronic illness?

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!

Reviewing my Journey from one end of the country to the other during lockdown

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You probably think I’ve gone mad at this point or atleast run out of ideas – writing about my travels from one end of the country to the other. But I am, so such is life. And yes I have many other potential blog posts, I’m also thinking about starting a law blog to keep me occupied when I leave my job, unless I’m too busy trying to find a new job because internalised ableism is a bitch. I’m in a weird position with my health right now. Not really well enough to work full time. Unable to walk for 10 minutes without PEM and more than a few minutes without hip issues so would struggle to get to a workplace multiple days a week and work productively for 5 days without an electric wheelchair which I  can’t afford. I am looking into a self propelling one though just so when I move back in with the fam they can push me around. (They’re abelist selves will hate that)  Anyway that’s beside the point.

I had to go back to the end of the country where I work for flat inspections and to pace. Sounds weird that. But I do find my health is better up here as I don’t have the constant noise of my family draining my energy. I eat whatever and I don’t have stairs to contend with.

So where to start. I didn’t rate wearing a facemask, espcecially not an overcized one but it was all I had and it looked cute so I rate that. I feel like going out in things that previously would have faced so much negaitive judgement is easier if you can make the item pretty. The train station in my town was eerily empty but I was able to sit down whilst I waited for the train so can’t really complain. On the train it was only me and a family in the carriage until the end of the journey when a couple of other people got on.

Getting off of the train in London was a weird experience. Many people were wearing the face masks wrong, maybe the government should start sharing easy instructions on how to use a facemask properly. Maybe they already do and I just haven’t seen it. I popped into WHSmith because I didn’t feel browsing boots meal deals for too long was appropriate and I wasn’t that hungry so I just got a Lucozade, some hand sanitizer and mini eggs. I know it’s June. But Easter choc is the best choc.

I have never seen London  so quiet  and as usual the walk to the jubilee line killed me.  But it was nice seeing hand sanitizer points throughout the underground network. Unfortunately I had to stand on the tube as well as I felt too anxious to walk through people to get to seats at a social distance as getting there would break the social distance.

I’m so utterly pathetic. I felt really quite unwell and honestly that’s the worst part of being in London with an invisible disability. Heck even when it’s in some way visible it’s a good day if someone offers you a seat. Although social distancing issues aside I’m normally good at hunting down the last seat if I’m not travelling in rush hour.

I could sit on the second tube I got though and nearly zoned out and missed my stop. I am a liability on public transport. Honestly I’m amazed I’ve never actually missed my stop before.

I decided to sit in the sun for a bit at  as I had just under an hour until my train once I got to the next main national rail station which was really nice although sun makes me super nauseous right now! The train station handed out facemasks to people who didn’t have them which I highly rate as at the time of posting it is now compulsory to wear facemasks on public transport in the UK.

The toilets were open at the station which was great and there were hand sanitiser points outside the toilets which I highly rate and lots of reminders about maintaining a social distance.

The second train was more chilled than it ever is although I was very happy to get off and be back home. Made the very stupid mistake of walking back to my flat despite being in a lot of pain. I was so out of breath despite that 10 minute walk not usually making me out of breath even when carrying stuff so that’s a definite sign that my bodies not where it was at the beginning of the year.

Travelling during this time was a lot less scary than I expected it to be so I hope this helps those who are suddenly realising a need for public transport as the country opens back up after not needing it for a while.

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?

 

 

 

 

The lesser spoken symptoms of ME and EDS

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It’s nearing the end of all the awareness months and just to get that lil bit more awareness out I thought I’d focus on the not just fatigue parts of ME and the not just joints part of H-eds. Now I do want to add a disclaimer that these are my experiences of symptoms. Not everybody’s. I have a mild case of EDS and co so understandably my experiences are different to someone with a more severe case. My ME is here there and everywhere in severity although my new supplements are getting me out of the horrific flare I’ve been in. We love D-ribose. The taste no. Not collapsing multiple times a day, just trying to get to the bathroom yes. I’ve never been severe, or super severe though so although those symptoms have happened they’re not a constant.

That was way too long of an introduction! Lets get on with the content.

EDS is bladder pain, bladder discomfort. The more full your bladder is the harder it is to urinate. The pain feels like it’s growing by the minute and it’s all consuming. You get frequent infections.

It’s nausea, food just not feeling like it digests. Even drinking water can cause nausea and a sort of sloshy feeling that a healthy body would only get if they drank too much. I personally find squash and diet coke kinder to my stomach than water, no idea why that is! It’s spending money on countless anti-nausea remedies and OTC medication, finding often they are of limited effect. GPs are reluctant to offer anti-emetic prescriptions in the UK.

It’s bloating, retaining so much water that your painfully bloated you feel and look pregnant and go up a clothes size or two on bloat alone.

It’s reflux, sometimes so bad that it keeps you up at night.

ME is pain, never ending pain. Frequent migraines, light sensitivity which not only causes pain but dizziness. Laying in a bedroom with the curtains seldom fully open really gets quite depressing.

It’s unbearable head and neck pressure. It can be kind of eased by hanging upside down at least for me but that’s not sustainable for a long period of time.

It’s drop attacks, heart palpitations, breathing difficulties.

The brain fog that leaves you feeling stupid and can be really quite scary at times.

Cold extremities despite being in a heatwave and sweltering.

Blurry vision. I don’t think the list of ME symptoms ever ends I could write a book, but it’d be a boring book so I won’t. I hope you’ve all either learnt something from this list or if your unlucky enough to have these conditions yourself or in the process of being diagnosed that this somehow helps make sense of your symptoms and makes you feel less alone.

 

 

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.

 

Brain Fog

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Brain Fog is a symptom of ME, fibromyalgia and many other chronic illnesses. It involves your brain not working and can be one of the most debilitating symptoms of illness for some people. Today I thought I’d share some things that happen to me as a result of brain fog, when reading remember some of these things that they probably happen for healthy people occasionally but for those of us with chronic illness it’s not occasional. It’s often multiple times a day every day.

  • Going into a room, forgetting what I came into the room for, leaving the room then remembering and having to go back into the room.
  • Forgetting to pick up my card on the way out to the shops, only to get downstairs or half way down the road to realise.
  • Forgetting my train of thought
  • Forgetting what someone has just said to me
  • Wait, what day of the week is it?
  • What month is it again?
  • A lot of dyslexia like symptoms despite, as far as I know, not being dyslexic.
  • Not being able to process what I’m reading
  • Blowing on cold food….
  • Not being able to find the words to say to respond to someone and converse
  •  Just not being able to speak
  • How do I math?
  • Making really stupid mistakes when trying to learn spanish
  • Have I taken my meds yet?
  • Almost taking night meds instead of morning meds
  • Forgetting to take meds then wondering why I feel unwell

I’m sure there are many other ways brain fog affects me. What does brain fog do to you?

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?