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?

On Sleep and Chronic Illness

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Sleep. What an interesting and topical topic. Seeing as sleep is essential for the functioning of the immune system and many people are struggling to sleep right now because of anxiety associated with the pandemic, I figured I should write about sleep and how to help with sleep as someone with chronic illness.

I feel like us spoonies struggle with sleep in two different ways. We either sleep too much (hypersomnia) or just cannot sleep (insomnia). Personally I struggle to stick to a normal 9-5 working sleeping pattern due to pain and nausea and because my ME seems to like the hours from 9pm onwards more and hates early morning rising. Many times I’ve gone into work on 4 hours sleep or less. I can easily sleep 10+ hours a night and have naps throughout the day when I’m in a flare. So I guess I go both ways…

Sleep is essential and not having enough of it can make it that much harder to get through the day or make us hyper tired and delerious and then crash later. So if your in the camp that is struggling to get to sleep at night or struggling to get to sleep early enough because your body clock is just against that 9-5 life then here’s a few tips.

  1. Have a wind down routine Although some people can just switch off and yeah I can sometimes, most people can’t. Be it having a hot bath, doing some yoga, reading a book, watching some TV or a combination of the above a wind down routine is essential for a good nights sleep.
  2.  Try to go to bed and get up at the same time every day. If you work I’m sure you’ll relate to not sleeping great on a Sunday night because you slept in over the weekend. Going to bed and getting up at the same time can have a demonstrable impact on your sleep.
  3. Sleep tea/night tea can help. I drink the Pukka brand of night tea.
  4. Don’t stress about not being able to get to sleep. For some it helps to get up and do something and for others it doesn’t.
  5. If you can,  spend your day somewhere other than your bed, and ideally your bedroom.
  6.  If you have night meds to take that may help you sleep take them in good time. This does two things, helps you fall asleep on time and means you feel less drowsy in the morning.
  7. I listen to podcasts/audio books to go to sleep, I find this helps occupy my brain whilst I’m trying to sleep.
  8. Putting lavender oil on your pillowcase is known to help with sleep
  9.  Try to limit your caffeine intake, especially past early afternoon!
  10. Finally, if you struggle with sleep because of pain try putting pillows under in-between different body parts (For example in-between your legs)

I hope this has proven helpful, there are many other tips and tricks floating around but I wanted to keep it to 10. What helps you sleep?

 

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.

 

 

 

Living with chronic illness in lockdown

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Many have said that lockdown gives the normal healthy population a taste of what it’s like to be chronically ill. The constant missing of something and the loss of purpose is very similar to what happens when you get a chronic illness. Especially one that causes you to lose your job, lose friends and end up largely housebound.

You could say that us chronically ill folks have been equipped to the challenges of social isolation.

However, social isolation and lockdown can bring up it’s own challenges.

Suddenly the whole world is trying to get fit and make gains by working out at home. Trying to be productive whilst in lockdown.

Doing all the things we wish we could spend our days doing but can’t.

I wish I could bake more than a super simple no mess recipe without payback. I wish I could spend an entire day reading. I can read for 10-20 minutes without having to take a break and can’t sustain that throughout the day. I wish I could delve into a new series and binge it in a day. Actually watching it, following it. Instead of dozing throughout and having it on in the background.

I wish I could spend hours perfecting tiktok dances. Instead one attempt and my chest acts up for a good hour.

Without discussing the fact that atleast in the UK able bodied people can have one exercise session outdoors a day there are so many things able bodied people can do whilst remaining at home.

I can understand the anger of some people in the chronic illness community over able bodied moaning in this regard, because seeing and knowing everything that can be done from home leaves you with the feeling that your yet again missing out.

The rhetoric that we have to learn a new skill, start a business and get fit in lockdown can make us feel like we’re not good enough.

Let alone difficulties some of us have in finding food delivery slots. I’m lucky I have a little Tesco express opposite me. But I would be unable to walk 10 minutes to the nearest supermarket then queue up outside the supermarket and then do my shopping and carry it home right now due to the flare I’m in. That trip was always exhausting without the flare and the queue.

However lockdown has also done good things for people with chronic illnesses. Suddenly we’re feeling more included and more connected to people as the world switches to embracing virtual communication and forms of socialisation.

For some of us, our quality of life has improved because this social aspect has come back into play.  I myself am feeling relived that I don’t have to overextend myself to look like a normal 22 year old. There’s less FOMO and less having to say no or saying yes and paying the price.

The switch to having to work from home and school from home is hopefully going to make lasting changes that lead to the world being more accessible for those with chronic illness and allow us to reach our full potential and I’d  like to think that people are now going to be more understanding towards people with chronic illness. Once they realise that getting to stay at home all day isn’t “lucky”. One can hope for a positive change from all this right?

How are you finding this period of social distancing?

 

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.

 

This is ME

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I’m gonna use this time of self isolation to raise awareness for ME/CFS. This COVID-19 shit and especially the UK vulnerability criteria and how mine and my GP feel about it has made me realise how little people know about this illness. It’s kinda like the UK doesn’t care that we’re at risk of significant and serious relapse because we won’t die. GPs are also seeming to ignore what the ME association and Action for ME believe about the interaction between COVID-19 and ME/CFS. It’s not hard to google kids.

The sad thing is many GPs are not at all educated about this condition and there was a recent study showing some shocking statistics about what GPs believe about the illness and the people with the illness.  If even GPs believe we’re lazy, we need to exercise more and that it’s not a real illness then how are we supposed to get help and treatment? Now in my personal case it probably doesn’t help that I’m awful at advocating for myself and I never push to get what I want or tell the full story.

But telling the full story is hard. It’s hard to explain what’s wrong when in essence it sounds like everything is wrong.

My ME affects me in a myriad of ways. I get numbness, tingling and even burning in my feet and left hand. It leads to difficulty controlling my hands and my legs will oftentimes forget how to be legs.  I have seizure like shakes which hurt. It’s like a full on core workout. I can’t move throughout them and I can’t stop them. But I’m aware of them. I’m dizzy, even when laying down. I feel intense pressure in my head. Struggle to breath, get heart palpitations. Easy muscle fatiguability, I struggle to keep my eyes open. Nausea, Cognitive dysfunction and full body pain. I have a chronic sore throat and cough and often have a low grade cold. I’m sensitive to light, less so noise and smell but it does happen. My glands swell, my chest hurts. I have visual disturbances, most commonly in my left eye.

Yet I function, or atleast look like I function as the normal healthy adult. Yes I’ve had a lot of sick days lately. ME flares suck. Now I’m self isolating (by choice, sorry finances) and hilariously last night developed coronavirus symptoms. I was coughing more than usual and this morning I spiked a fever so absolutely no work until next friday! I get fevers a lot, and I don’t think it’s COVID-19 but can never be too careful in a global pandemic.

But for 6 years of ME, having never had a sick day from a job until 2 weeks ago is impressive.

What they don’t see is how much I have to push myself to do these things. How unwell I feel doing these things and the state of my flat. They don’t see how unwell I am when I wake up in the morning and the difficulties I have showering and washing/brushing my hair. The difficulties I have cooking or doing a form of exercise that isn’t climbing.

Yes I am well for someone with ME. I’m lucky right now… But it’s still significant. It’s still a significant daily battle with all of these symptoms at varying degrees. I’ve heard that most people with ME who can work full time only feel occasionally ill. I am not one of those people. I push and I fight, because there is nothing worse than feeling like a burden on the world and feeling misunderstood or feeling like your not enough.

There is progress being made in understanding this illness. It just hasn’t reached the mainstream yet and it needs to. We need proper education, proper research and as always more awareness.

 

COVID-19, Self isolation and ME

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I know we are all sick of hearing about it. There is nothing else in the news but this actually quite disastrous global pandemic. Not just disastrous health wise, but disastrous business wise and for individuals job security and financial security. We have seen mass hysteria, panic buying loo roll of all things (Plz send me some if you have some spare) and lots of vague advice. Today I want to write about the effect of the COVID-19 pandemic on me, and more specifically me and my ME.

So in the UK ME is a grey area with regards to the guidelines for at risk people to self isolate and stay away from busy offices etc. We’re not entitled to flu jabs unless we have comorbid conditions that do entitle us to such flu jabs. But the ME association believe we are included in the vulnerable population that should self isolate (https://www.meassociation.org.uk/2020/03/coronavirus-covid-19-latest-government-advice-and-what-it-means-for-people-with-me-cfs-17-march-2020/) and recognise the risk of a significant, prolonged and potentially severe relapse if we catch COVID-19 and I know Jennifer Brea has been tweeting her heart out about COVID-19, neurological symptoms and various post virus statistics for previous outbreaks. We know any virus can cause a flare up. A cold has caused one that I’m still recovering from. It’s been over a month. Now Covid-19 is more comparable to the flu than the common cold – we also don’t know how it will effect people with ME and I myself – whilst I can afford to do so (which won’t be long) am not prepared to take that risk.

It  may be a risky decision. A decision that many in my life will not approve of (My family especially). But it was not a decision taken lightly. I have a full time job, a job I’m in probation for and therefore by doing this I may lose it – which considering the likely economic climate come June when probation ends is a risk. The potential loss of income is a risk considering my mad expensive rent and the fact that I don’t know how my parents would react to me deciding to move home in august, work part time and look after my health. (Yes partly my fault because I don’t open up to them).

But my immune system is down, this morning I came down with what I’m pretty sure is an ear infection. You know that classic childhood middle ear infection. I’m 22. My body is weak and I need to acknowledge that. If the conspiracy that coronavirus went round my city in December/January isn’t true and I just escaped because I was stronger then. In terms of my immunity (and L-Lysine which I’m gonna resolve to take every day again because it definitely meant aside from some tonsillitis in November I had a persistent low grade cold instead of constantly getting sick). I’m also not back from the flare from the cold I had end of January/early February (I didn’t cough much I don’t think it was coronavirus. Started with a horrific sore throat and then materialised).  If I get a virus now it could and likely would knock me out. Not just for a week or two but for months.

Health comes first. It’s difficult, it’s scary. Not only because of financial consequences and peoples perceptions . But because being stuck in the house reminds me of when my ME forced me to stay largely in the house and horizontal. There’s trauma there. Trauma that may need to be worked through if I am to stay sane for however long I stay off work. And not only stay sane but come back to work in a mentally stronger place with higher concentration etc. The trauma is the scariest part of this. Never did I see myself willingly largely confining myself to my flat by choice because life is better experienced outside of these four walls. But I also didn’t forsee a pandemic and to protect my current health and my future health it was a decision that had to be made.

 

 

Words from an ME flare

I’m in the midst of an ME flare, something I should have seen coming. Something I should have got a grip on the second I noticed it starting nearly a month ago now. Many thoughts have gone through my head. If only I took a sick day at the time it started. What if this is now my new baseline and even sitting up feels like running a marathon again. What if I lose my spirit, my soul and stop climbing. (Spoiler alert, I won’t. But what if I’m forced to). Climbing is my identity, my passion and my sanctuary. I can’t bare to lose it again.

That aside, living with ME is HARD. Especially in a flare up. When everything is so unknown and you are so unbelievably drained that you can’t even put up a false front anymore. When you feel all the guilt, all the worry that no one believes you and thinks your just trying to get out of life and the fear. It can be hard to not let it take over and mess with your mental health, which is really needed during these times.

It’s hard to go through your body being so drained that you just can’t anything. Living with an illness more commonly known as “chronic fatigue syndrome” when it’s more than just fatigue. It’s impossible for people to understand due to the fluctuations in and dare I say it, the name and lack of research into the illness. No one sees us at our worst and often people see us looking okay when the reality is we feel the opposite.

In these times, when you have 101 things to do and aren’t up to one of them it’s important to have grace and alongside that have faith that it will get better. You can only do so much and sometimes flare ups happen with no reason behind them and no fault of your own. They just happen.

I find my faith helps me. Cheesy as it sounds and I know it doesn’t help some people but god does have a plan. I may not be a practising Christian in the sense that alongside other commitments I do not have the spoons to go to church. Nethertheless, dealing with what life throws at me with grace and having that faith is a key to me coping with this and not getting eaten up by it.

It’s hard and it takes practice but it’s so so necessary to deal with this chronic illness life.

 

 

What even was this week?

Seeing as I don’t really have the cognitive energy for a proper post I thought this week would be a week in the life.

Monday I had an ultrasound before work. Oh don’t we love those bright and early trips to the middle of nowhere to get an ultrasound. Fortunately this medical centre wasn’t as in the middle of nowhere as my previous ones but it was out of the city. I think it was clear which is irritating because it means I’m going to have to push to ensure that referral is made which I really don’t have the energy for but such is life. I found it was painful though despite the fact that the ultrasound wand wasn’t pressing too hard on my abdomen. Asides from chaotic, work was actually okay on Monday. Horray for one day in which I don’t go home and have a mental breakdown. (Okay an exaggeration but Friday hit hard).

Tuesday work got all the more chaotic and I had a climb after work. Honestly I was going to train hard but I ended up chatting and projecting a few things as my bod was struggling. I did get a burly swirly that I was proud of and some roof work so was still sore mind you!

Wednesday we worked again and still chaotic from Tuesdays happenings but it calmed down a little. I had the most efficient service in boots ever when grabbing my prescription and then climbed at the women’s group. There were loads of us this week which is incredible to see! I took it quite easy cause injuries and shit but tried to get back on the roof and que soreness.

Thursday I wasn’t doing good with my ME but got through work regardless. No rest for the wicked hey? A few things made Thursday a really bad mental struggle. I don’t want to provide details on here cause privacy of myself and others. I also don’t want to give the wrong impression about my feelings towards anyone because it’s not at all one person and part of it was I didn’t have enough energy to feel happy. I was essentially a shell of a human who went home, made dinner, had a bath and then slept.

Friday I came into work feeling more rested and more positive as a result. Even with some pretty hellish cases and some phone calls to make! I’m definitely becoming more confident talking to applicants on the phone though and it’s nice to see some progression there. It hit rock bottom after a talk with my manager. (Yes I’m kind of implicating here but I honestly don’t know who or what or idk. Maybe I’m just an awful person.) But I came home cried. Drank tea. Tried to make myself less empty shell so hard to see her way through the next 10 and a half months in this job if she even passes probation like and a little more (faux) positive for an evening at the wall.

The evening and night really made my day. I didn’t really climb well or much because endometriosis hurt like hell but got a couple of projects and then went out out and um didn’t sleep cause chronic illness hates me and alcohol and a normal 22 year old. I felt pretty horrendous (not hangover or drunk horrendous) until 2pm and then madly headed to a climbing competition. Didn’t do particularly well – there were problems there that I know I have in me but just could not do on the day! Either because my joints were playing around or due to general strength issues even once knowing the beta! But had a good time regardless and enjoyed socialising and not having to put pressure on myself.

And that concludes the post.

Hopefully next week will be more positive and less painful. Despite many little wins and moments of joy, can’t say it was a great week!

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.