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?

August was a weird one

Photo by Maddi Bazzocco on Unsplash

Another month of 2020 done!

August was a weird one. I moved back in with my family which is a bizzare adjustment. They don’t really understand my illnesses or why I can climb but should be using my wheelchair to get into town and back (which I’m not proficient at self propelling on uneven streets quite yet so need someone with me to push when needed) and i’ve gained weight because people keep on baking, I eat dinner with the family and there isn’t much easily accessible healthy food in the house. Although It’s not much compounded with how bloated I have been it doesn’t feel good. As I’m getting healthier with pacing I’m contemplating trying keto but I’m still not feeling like I’ll be healthy to reliably make meals daily once my masters starts so…

Despite seemingly feeling healthier with pacing, I have had some bad weeks as a result of too much walking. I’m v good at overestimating my limits and maybe that’s because with chronic illness are limits can change like the wind. You don’t always realise the week long payback you’ll get from simply walking to the doctors and back and I’m noticing the deterioration in my joints more from having to carry heavier things and the climbing walls being open again. I’m trying to stay conditioned when I feel well enough but that’s rare with having to manage other things I need to do.

In August I got my wheelchair. I did yet another training contract video interview (and then got rejected), participated in a negotiation competition and got to the final 12 and did many other things.

However it was also a month of disappointment and feeling like I wasn’t good enough. I got let go from a voluntary position. And admittedly it’s better for me that way as I could never have fitted into the neat little box required and my ME and suspected ADHD means I can’t proofread well. It would have ended up being too much stress – working for someone who wouldn’t understand and is quite frankly not my sort of person.

Although it made me feel really low for a bit and still does when I think about it because it’s a literal failure. I know it’s for the best. I just wish I was given a second chance to prove myself.

I also have the feeling that my family really doesn’t support me for leaving my job, despite it being necessary for my health and to be able to pursue what I want from life.

But that’s life. It’s full of ups and downs.

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?

Step into my shoes: Growing up with chronic illness

Imagine being eight, going through a phase of constantly spraining your ankles in PE, your teachers not believing your in pain when you ask to sit out half way through for the 3rd week in a row. That started it, the belief that no one believes you, everyone thinks your a fraud. There can’t be something that wrong because if there was people would believe you.

Being nine and spraining more ankles and a wrist. Being told you can’t go horse-riding because you have an injury, albeit minor. That started the feeling that you should hide the pain because you didn’t want to miss out on the fun. Horse-riding was a passion at the time and the pain wasn’t that bad. For pain that wasn’t always going to be there when you rode it was worth pushing through.

Imagine being 11, running around in the playground getting a pain in your lower right abdomen. A pain that unknown to you at the time would plague the rest of your life. You’re scared, but feel unable to open up to your parents about it. You reach 12 and it gets worse. Your dad somehow reads your texts and says your telling your friends you feel unwell for attention. You ask to sit out of PE because the pain is beyond excruciating your scared you’ll die. The teacher doesn’t believe you. You try to play basketball despite, standing out hand on your lower right abdomen, leaning against the wall whenever possible. Because that teacher didn’t believe you, you don’t go to the medical room in the next class. You think they to won’t believe you. You internalise it even more. Hide the symptoms from parents and teachers even more.

More and more goes wrong with your body. Dizziness. Going from once being fit to struggling to walk up the stairs to your English class without feeling like you’ll pass out. Your knees hurt and you stop horse-riding. Between the abdominal pain and the knee pain from having feet in the stirrups it’s just too much.

At 14 you take ibuprofen into school, taking it every three hours instead of every four. Even then the abdominal pain rarely eases up.

The teachers think you don’t try hard enough. You should be getting better grades. But how from the ages of 11-16 do you pay attention in class when you are scared for your health but feel you have no where to turn. When the nausea and abdominal pain is distracting at best and excruciating at worst. When you are depressed, self harming and develop anorexia because you feel like no one understands you. No one is there for you and no one listens to you.

Doing your best isn’t killing yourself. It’s not pushing yourself unreasonably. It’s simply doing your best.

Maybe I should have been getting straight A’s but my circumstances meant I didn’t.

At 16 you develop ME, but it comes on so subtly. You start getting worse at climbing, cycling two minutes down the road makes your legs feel heavy and weak when previously you could easily do the entire paper round. The sore throat comes on and it never leaves, you feel tired and start falling asleep at 2pm over the summer holidays or fall asleep at 8pm in the middle of watching criminal minds. You’ve been busy. It’s nothing. You start college, the nausea gets worse, you feel tired but everyone’s tired. It’s nothing. That is until the dizziness and heart palpitations start, the fatigue hitting you like a ton of bricks at the beginning of second year. (Although not as bad as I am now). The doctors don’t know what’s wrong. They record a sitting heart rate of 135bpm but say you are just underweight. Hilariously you then relapse into anorexia, fall into an exercise addiction and push through injuries. You feel the PEM (albeit mild compared to todays PEM it was significant at the time). The what is now known as ME gets better but your abdomen and all those organs decide not to be okay. You lose weight after gaining back to a healthy weight. In pain. Nauseous. Bloated The doctor says It’s just stress.

That’s just a snapshot of life with chronic illness. We really need to start believing our young people. Really making our young people aware that we are there to listen and help. Not just stick to the standard “faking it, growing pains, stress, weight” reasons for symptoms out of the ordinary. I know had I been believed and had I felt loved and able to speak about my symptoms from the outset I would be a more confident person now. I wouldn’t have spent so much time so scared, thinking about what could be wrong with me and maybe I then would have got better grades.

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

ilkka-karkkainen-yn8aHOdNLZo-unsplash

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!

EDS Misconceptions

wolfgang-hasselmann-6e_fwXcSXQI-unsplash

Good afternoon, evening, morning. Thought I’d do a follow on from my h-EDS post by sharing some EDS misconceptions,

  1. You have to be flexible to have EDS No, although many people with EDS are flexible there is a difference between flexibility and hypermobility. Flexibility comes from the muscles, however hypermobility comes from joints and ligaments. As a lot of people with EDS find they’re muscles tighten to prevent dislocations they may not be flexible. Furthermore widespread hypermobility isn’t present in all  types of EDS. In vascular EDS the hypermobility is more in the hands and feet.
  2. You have to be severe to have EDS  No. EDS is a spectrum disorder. This means that although yes many people are severe and have multiple comorbidities it is not essential to be on the more severe end of the spectrum.
  3. You have to have a family member with EDS to have EDS No. Spontaneous mutations happen and the nature of awareness only recently increasing and many likely going undiagnosed in the past means that a family member may indeed have it but just isn’t diagnosed.
  4. You have to dislocate Mahoosive misconception. Some people only partially dislocate others don’t even do that.
  5. If you have high arches you don’t have EDS No – both flat feet and high arches are signs of EDS
  6. You have to have stretchy skin to have EDS – No No No No No. This is associated with the classical type more than other types although can be present in other types.
  7. EDS only affects the joints –  No just no. It affects skin, gums, the bladder, bowels, uterus, mast cells, stomach, uterus. Literally everything
  8. Exercise cures EDS Again no. For those who are able yes it can help but there are many with EDS who simply can’t be it due to the EDS itself or a comorbid condition.
  9. Everyone with EDS bruises easily No. Again this is just one symptom many with EDS experience, but not everyone.
  10. It’s just a name and it doesn’t matter what you call it No no no. EDS is often more respected by doctors than HSD or hypermobility syndrome or benign joint hypermobility. It matters.

 

Hypermobile Ehlers-Danlos Syndrome

zdenek-machacek-FjhCWctnFQM-unsplash

It’s May. Which is apparently all of the awareness months. Feels like some sort of conspiracy to be honest. But one of those is Ehlers-Danlos awareness month. (EDS)

All forms of EDS are genetic disorders of the connective tissues. Connective tissue makes up pretty much everything in the body, other than the muscles which means the symptoms and signs can be prevalent throughout the body and there are a number of common comorbidities that arise.

I’ve recently been diagnosed with the Hypermobile type of EDS (h-EDS). And I’m still kind of in denial and maybe that’s because I’m not that bad. I’m not that hypermobile and I’m certainly not flexible because I have v tight muscles. I score 5 on the Beighton Scale, but also have hypermobile ankles, hips and shoulders and suspect my neck is hypermobile as I am getting more issues there. Weirdly I do partially dislocate parts of my body that aren’t hypermobile, but based on things that have been said to be by physios about how I stand and how that’s caused other issues, it’s likely I was in the past.

There’s no genetic test for h-EDS yet and diagnosis is made by ruling out other conditions including other forms of connective tissue disorder and EDS if you look like you may be a candidate for one of those diagnoses and by ticking a certain number of boxes based on hypermobility and wider manifestations of a connective tissue disorder. (Stretchy skin, velvety skin, Easy bruising, mitral valve prolapse etc) Family history and actually being symptomatic is also taken into consideration.

You don’t need family history to get diagnosed or even to have EDS as spontaneous mutations are possible, and it could be that previous family members are less effected than you or doctors just failed to diagnose them and that’s why there’s no family history.

I don’t have a diagnosed family members but I don’t think I’m a spontaneous mutation.

Denial or not a diagnosis of h-EDS explains my entire life. It explains the proprioception issues I have, it explains my bad handwriting. It explains why I went through I phase of spraining my ankles every two seconds and them not being the same since.

Me constantly having injured ankles was the first time I experienced people not believing me when I said I was in pain. I was 8 and my teachers believed I just wanted to sit out of PE. I see how that can be interpreted, especially when it happens week in and week out but that wasn’t the case. I actually loved PE, especially back then as I had friends to go with. But the impact of running wasn’t good on my ankles. My parents belived me at this point although they didn’t take me to a doctor and just said I’d sprained my ankle.

It explains the constant nausea I experienced since the age of 10 until I figured out how to cut things from my diet and control what I ate to manage it as best as possible. Now I’m able to start reintroducing things. The headaches, the knee pain caused by running and horseriding. I eventually quit horseriding because an hour of my feet in the stirrups was just so uncomfortable. Let alone two. The shoulder pain the hip pain.

I could go through my life bit by bit in order of what joint went wrong first.

I now have multiple daily subluxations (partial dislocations), many of which the outsider is unlikely to notice. They’re not all excruciating traumatic experiences. And often I hide it. No one wants me to share very single subluxations and I don’t have the time and energy for it. I fully dislocate less often but it happens and it hurts. My muscles tighten up to prevent these things from happening and that also hurts. I’m in daily widespread pain. I also suspect my bladder issues are EDS related and although they’re not bad by EDS standards it still hurts, and it’s a nightmare. I suspect I have retention issues and it means the more I need to go the less I can go. I have painful bladder spasms and get frequent UTI’s. I constantly need to go because I never get the feeling that I’ve emptied properly. I’ve also experienced incontinence which was embarrassing when I was younger. It has a very real effect on my life.

And that’s why we need awareness. Not just to the general public but also to medical professionals who still struggle to connect the dots. It takes a lot of emotional energy to go back and forth to the GP over what is often taken as 101 different symptoms. It’s exhausting to tell each new doctor the same story. It’s exhausting to get 101 referrals for all the issues you have, and that’s why I haven’t yet solved the entire puzzle.

I have so many symptoms that it’s simply overwhelming. We need allies, we need advocates we need doctors to stop putting it down to “growing pains” or some sort of hysteria or psychological distress.

We’re really sick, albeit at different levels of sick and the earlier the diagnosis the more chance of people not deteriorating as much as they otherwise would.

 

 

Painsomnia

anthony-tran-i-ePv9Dxg7U-unsplash

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?