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.

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?

 

 

 

 

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.

 

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!