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.

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?

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?

 

Finding the positives in lockdown

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The UK has been in lockdown since Monday evening. As I’ve been symptomatic and therefore in isolation. Today, before I realised I still had a fever and so should still isolate I went on an outing.

Only to the pharmacy two minutes from me, to get my prescriptions which I would have otherwise ran out of and to the Tesco opposite my flat to get milk and cereal. I have a food delivery tomorrow so I just needed some easy to eat stuff to tide me over as I’m not feeling 100% up to proper food.

The world has changed a lot in the last 8 days. I knew that, I’ve been watching the news but nothing could prepare me for that first step outdoors. That taste of freedom. Only a taste because fever means isolate past 7 days but bitterness aside…

I live in a city centre, a normally bustling, vibrant city centre. I live next to a pub and in close vicinity to many others. I normally hear people, music, cars. When I go into town it’s normally busy, even at 10am on a Saturday morning it’s busier than it was today.

Today it was pretty much dead. Yes I could see people, and certain people not abiding by the two meter rule but it was comparatively dead. There was tape down and barriers up in boots. No forms to sign when picking up medication.

It was like I got back from work 8 days ago to a normal functioning world. Yeah the situation was getting serious and the climbing walls had closed but the pub was open and busy as ever. The streets were also busy as ever.

And then I came out in some dystopian future. Some alternate universe.

As someone who was largely bedbound for 2 years I do sometimes forget how much of a change this is. But going out today made me realise that this virus has lead to all of us taking huge sacrifices. Huge lifestyle changes and it’s forced us to stop and slow down.

I certainly welcome that. I hope others will to. If I had to go work today because I’d already self isolated for 7 days and didn’t realise I had a fever this morning my body wouldn’t be coping. My body would just get the next virus, the next infection, the next injury. This year I’ve climbed so hard that I’ve had three relatively minor finger injuries, my hamstring and knee ligament injury which will take a couple of months to fully heal, an elbow injury, ankle injuries and many other lil niggles. I’ve pushed through work, tried to become a lawyer and since the end of January I’ve had a cold, a stomach virus, an ear infection, numerous bladder infections and now this virus, be it COVID-19 or not. My immune system isn’t as good as it was pre ME but it’s never normally that bad.

I was running my body into the ground. I haven’t worked a 5 day week all month. More like 3 day weeks maybe 4. This virus. Not just because I may have it but because of it’s effect on the country has forced me to slow down. It’s forced me to give my body what it wants. A chance to heal. A chance to function within my limits and to come back to work revitalised.  A chance to focus on rebuilding my body off of the wall, at a lower intensity and focusing on dealing with muscle imbalances so that when the walls open again I get less injuries.

It’s also given me a chance to reflect. To indulge in my off wall passions and think about what’s really important to me. And funnily enough, I’ve had more time to connect. Connect to people I’ve neglected in the past.

The situation is awful. For everyone. I know I’ve been feeling extra unwell these past eight days. The horrific cough, the breathing difficulties – not enough to need help but enough to feel like I can’t get enough air. Enough to mean I can’t sing or proof read my essay aloud like I normally would. The fever. I’ve also been extra weak and dizzy. I’ve spent the majority of these days horizontal on the couch and have intermittently had to crutch around as my legs have been so weak that I’ve needed to take that weight off them to get to the bathroom without crawling.

We’re all affected by this. Either directly or indirectly. But good will come from it and god will help us through.

Staying mentally sane in self isolation from the self isolation expert.

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The world is currently in an unprecedented state. Countries going into lockdown, boarders closing and asides from those of us who still have to go into work (Me, when it’s safe to do so) we are all being asked to stay inside our houses. What a dream! An actual dream. I’ve definitely been told that when I’ve been really sick with ME and largely stuck in the four walls of my bedroom.

Being stuck. In the confines of your house, or room, be it with family or alone can be really bad for your mental health and your relationships with others. I understand that, I know that. Being stuck anywhere, especially if you are easily bored, irritated, like to move and exercise and benefit from changes of scenery is hard. So as an expert in this field and as someone currently self isolating due to COVID-19 symptoms + I’m at a higher risk than the average person I thought it would be wise to share some tips.

  1. Don’t think of it as being stuck. Change your perspective, think of your home as your sanctuary, your castle, your safe haven. If you change the dialogue around how you feel to more positive dialogue this can definitely help keep your mind in check.
  2.  Try to keep things clean and tidy – tidy space tidy mind. This is something I really struggled with when bedbound and still struggle with but it definitely makes a difference.
  3. Get dressed, shower, make an effort to look pretty – I promise you it makes so much of a difference to your mental health if you make this extra bit of effort even if your not going to see anyone. I’m not saying you need to wear a full suit or a full face of make up but get out of your pyjamas.
  4. Lists lists lists – it doesn’t need to be a full schedule of your day hour by hour if that’s not your vibe but if there’s things you know you need to do write them down on a to do list. It is very satisfying to get them done and will at least reduce the social media time wasting feeling behaviour that I feel we’re all beating ourselves up over at this time.
  5. Stay connected. We may be distant geographically but we can stay together. Use social media to stay connected, find live streamed events and activities, phone your nan.
  6. But be mindful of how your using social media! There is a lot of anger out there right now. Curate your feed. Spread positivity and not hate. Don’t spend hours looking at the news, it’s nothing but COVID-19.
  7. Move your body – if you can. It doesn’t need to be much at all and can be just a few floor based/bed based exercises or if your fit, healthy and feeling it can be much more intense, especially if your able to panic buy workout equipment. Movement is really important for mental health, I find it is definitely helping set me up for my day and put me in a positive mindset no matter how small.
  8. Try something new. Do that thing you always wanted to do but never had the time. Learn that language, learn to draw, read that book, watch that TV show. Having a new hobby that can be done inside the house can fill the gap left by that hobby you are now unable to do for the time being and take your mind of the news.
  9. If you have space make the most of it. If your lucky enough to have a garden use it, if you have separate rooms that you can go into – use them. If you only have one room then try and use different sections of the room (I.e do your best to not stay in or on your bed all day)
  10. Don’t be too hard on yourself! I feel like there is a lot of pressure to be productive and monetize our time in social isolation. To get fit and stay in shape. Don’t give into it. It is only natural to be spending more time on social media in these times, to want to just eat sugar and just not be very focused. Do what you need to do your you, and only you. You are doing the best you can and we will all get through this!

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.