Well that was a quick month

April seemed to have gone by in a flash. It also seems to have been very sunny, not good for the migraines but good for the mental health when I’ve been able to get out.

Trust the UK to get it’s act together the year we’re in lockdown.

I’ve got to confess I’ve spent the majority of the month sleeping. My ME has taken a huge hit from months of overexerting and a possible COVID-19 infection which I still can’t fight off. I still have a cough. It seems to come in a cycle now though rather than being completely unrelenting. I’ll stop coughing for a couple of days then the cough will return. Under the UK guidance this means I don’t need to self isolate as I’d never actually stopped coughing so it’s not a new continuous cough and I did the initial self isolation when it started. However I am regularly checking my temperature and if I get a fever again I will, as that could be sign of reinfection. I’m also taking essential shopping to mean essential shopping. Not “oh I just want a bar of chocolate”. I have witnessed such interpretations of essential and trying to combine trips where reasonable in terms of my ME to try and limit contact to the outside world just in case.

It’s so much fun not knowing whether immunity is a thing to the novel virus right?

I have spent the month largely sofa bound but doing my best not to decondition anymore. There has been lots of bad migraines, lots of bad pain days, lots of fatigue and brain fog.

My activities have been somewhat limited but I think a lack of energy has stopped me from going crazy during this lockdown. I normally get very cabin feverish very quickly which is why I had never mastered the art of pacing. In the past I’d feel a little better and then I’d leave the house and end up bedbound again.

Now I’m feeling a little better and yes leaving the house when I need to but also thinking of things I can do in the house which are less likely to cause payback. I’m finally learning how to pace. I’m noticing early warning signs of a crash and trying to slow down straight away. Instead of pushing myself when every inch of my body is saying no. I’m still not perfect at it, there are still peaks and troughs in my ME. I’ve not perfected the art of pacing. But by remembering that I will actually have to work full time again soon, despite not being well enough I’ve allowed myself to slow down enough to slowly get out of this flare.

I’ve become addicted to tiktok, follow me @spoonielivingfree if you want some quality content. I’ve refound my love of writing. And not just my blog but I’m kind of working on a secret project and wanted to write fanfiction again. (The actual fanfiction writing has been non-existent tbh)

I’ve been able to dedicate time and energy to reading. Mainly YA fiction because it’s accessible to my foggy brain. I’ve been really enjoying getting lost in fiction again. It’s not really something I can do without PEM after work as my job is so cognitive.

Lots of chocolate has been eaten which isn’t great for my waistline but weight gain is okay!

It’s been a hard month and a socially distanced month and I really really miss my family and I am so ready to go home, although I don’t know when as when the office opens albeit in a socially distanced way I’ll have to be in some of the time. Hopefully not all as some would give me leeway to go home without the guilt of annual leave. I’m kind of contemplating illicitly going home myself once I get a work laptop, if I get a work laptop.  Providing I have enough medication and the office isn’t opening imminently to my knowledge. Technically your allowed to move between households and if I went ideally it’d be for two weeks to limit what I may or may not be spreading.

But it’s not by any means be a bad month. Not every month that you get paid for not working a day. And in this age of adult responsibility and bills it’s not every month you get to make decisions to look after your health instead of running yourself into the ground.

Hilariously despite this entire month of time I’ve still not applied for PIP cause anxiety. Even tho I actually need to… I’m just not good at advocating for myself and I know I would be denied it because I don’t look sick…  and a lot of people with ME are.

I am the queen of procrastination over anything that causes anxiety.

How has April been for you?

 

 

 

 

My Mental Health is Suffering in Lockdown

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And we are in week I don’t even know of lockdown. But it’s fair to say the lack of meaningful human interaction is starting to take it’s toll. I’m an introvert but even us introverts will start to crack if left alone with our thoughts for too long. I’m lucky I have access to social media and people to talk to virtually but I’m definitely starting to feel more low than usual.

My sleep schedule is non existent

I’ve started having anorexic thoughts again. Sometimes some really intense ones that have been hard to not give into.

My brain fog is worse and my ability to concentrate also worse.

There are things other people can do, which would help like they’re daily outdoor exercise which I’m not yet really well enough to do. Daily. (Although getting there)

I feel this social experiment COVID-19 has played on us leads to two questions being asked.

Will we have the mental health services and resources to help everyone after this?

Is there going to be more awareness of the fact that poor mental health in people with chronic illness is oftentimes secondary as a result of the isolation it causes?

I really hope so!

 

 

 

Not working in the time of COVID-19

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Hello. I’m sure many of us are not working right now. Many people have been put on furlough or forced to take unpaid leave or like me are getting paid to not work until the organisation can provide the infrastructure to work from home or the office reopens.

At first it was fine. Like I had plenty of things to do (still do tbh) and quite frankly wasn’t well enough to work anyway. But now Easter is over and everyone’s working and more and more people in my organisation are getting laptops to work from home.

Don’t get me wrong, I’m so grateful to be able to spend the time on my blog, on reading more and on looking after my health.

But there is a sense of guilt. Despite circumstances being completely beyond my control. And the purpose in my life is not what it was last month.

I want to go home and see my family but when lockdown ends, the office will likely reopen and by which point I will be expected to be in the office infrastructure to work from home or not as I’m still in my probationary period.

There will be too much guilt and worry to book the annual leave to go home because by which point I may not have worked for nearly two months.

On what planet do I deserve annual leave?

I also don’t really need it, asides from the fact that home is the other end of the country. So for me to spend a reasonable amount of time at home and ideally limit the damage to my ME I could do with a good few days of annual leave when work requires being in the office.

I don’t know why I feel guilty because this is all out of my control and it is currently illegal to travel home. I can’t. Or I can but I’d be risking a fine and it’s morally wrong.

It’s not like I’ve wasted this time and I could have otherwise used this time to go home or do any of the things that may require annual leave in the future. So it’s all irrational and stupid.

But I think in todays society it is all very natural to have this guilt over not working. Because society would have us believe that our worth is our productivity and that that productivity is somewhat meaningless if it’s not related to a job. That’s not true.

Not in the slightest. We are all have worth regardless of our employment status.

Is anyone else having feelings of guilt?

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?

 

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.

 

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.

 

 

 

It’s okay to gain weight in isolation

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I’ve seen many a meme about weight gain in isolation. Which although funny and I relate really isn’t okay. Why?

Because these memes make it seem as though weight gain is something undesirable during this time and can be triggering for people recovering from eating disorders such as myself. We’re already in an unprecedented situation which is quite stressful for many people, this in itself can make it much harder for people in recovery from eating disorders to maintain that recovery. Memes, jokes and TikToks about the weight we’re all going to gain in this time simply isn’t helpful and may be enough to tip someone over the edge.

So I thought I’d pop in here and say that it is okay to gain weight during this time. Partly to reassure myself but also to reassure others.

We are going through a collective trauma. It’s only natural to eat more. Eat more “junk food” I hate that term, all food is good food in moderation. And we may be unable to eat as much fresh food as we would like. So yes, when combined with a reduced activity level due to gyms being closed and a lack of motivation/energy because we’re going through a collective trauma we may gain weight during this time.

But that’s okay. We are not defined by our weight. When was the last time you chose your friends based on their weight?

Hopefully never. We are worth so much more than our outward appearance.

From a health perspective yes being obese can give rise to health complications. But our bodies all have a set point, and you are unlikely to go much above that during this time. Furthermore, any weight you have gained is likely to naturally come off once this is all over.

From a health perspective, giving into restrictive eating disorder tendencies is going to be more damaging. Studies have consistently shown that being underweight is more damaging than being slightly overweight and coping mechanisms such as purging can actually be really dangerous and affect your electrolyte levels as well as risk damaging your esophegous and teeth.

It is okay to gain weight. It is okay to stick to your meal plan even if you think your less active and don’t need it. It is okay to eat what you want. There is nothing wrong with that chocolate, those biscuits or those crisps.

All food is good food and you deserve to eat it. Be kind to yourself. Just getting through the day is enough.

 

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?