The one where my body forced me to slow down

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March has been such a month that I feel like there should be an entire blog post dedicated to it. I think I’ve hinted that I was previously running myself into the ground and March was the month my body said no.

It actually didn’t start horrifically and by that I mean the first couple of days of the month weren’t too bad. I onsighted all the things within my grade range on the autos up at the time. Even a 6b on the continuous overhang. And if you know me you know that the continuous overhang is hell! The pump is real but I stayed calm, focused on body positioning and somehow it happened.

The month then very quickly deteriorated. Both in terms of my health and my ability to climb. Although I did find ways around my bodies extra limitations and was climbing the same grades where it suited and could find a unique beta to compensate! Some things were also going on at work at the end of February which were negatively impacting on my mental health. I hated being in the office and believed by team hated me. I was over it by the second week of March but I do suspect the extra stress didn’t do me any good.

The month involved a lot of pretending I was okay through extreme dizziness and pressure in the back of my head. Through muscle weakness and balance issues. Through a non-existent level of concentration and decreased cognitive function. It took a toll on my work performance (although I will still largely hitting stats…) and meant I couldn’t project and step the climbing up a notch.

It also involved a lot of openly admitting that I wasn’t okay. Sitting on the mats, feeling incredibly dizzy and clearly not looking well. Openly admitting to my line manager and her manager that my ME is flaring and I wasn’t doing particularly great. I found I didn’t have the energy to get up early enough to put make up on anymore and if I did I felt so dizzy that I had to take mornings super slowly.

My mask well and truly gone.

I came 16th in a climbing competition, both in that round and on the overall. Topping 9 problems – which is more than I managed the previous month. I think the setting just suited me a lil better but maybe that’s a sign of actual progress. Had a great time with friends, adrenalined up because my façade is important. Not for other people but for myself.

For one night I was a normal 22 year old.

I got a grade 2 hamstring strain and did some damage to the ligaments in the back of my knee. Climbed with one leg 2 days later because both got too painful. Not for my pain tolarence but because I knew I was injured although at that point had not gone to get it checked out.

March might actually be the month I saw some sense. Yes my body forced me to stop. I was well and truly done. That first sick day and a half. I couldn’t sit through that endometriosis pain for another minute. I couldn’t sit through those ME symptoms for another minute.

But I also saw some sense. At some point something clicked and I was like no.

Health first. (I say this all the time then we swiftly give up)

I got my leg checked out after it hadn’t improved in four days. Something I wouldn’t normally do which is why I still have so many lasting injuries. I’ve had a back injury since the end of November.

I peaced out of the office at 9:30 one morning because my ME was not playing and used some sense by taking the next day off.

I expressed by concerns over the you know what situation and peaced out for a further 10 days.

Ironically I then got a suspected case of you know what that night. If that doesn’t describe ME in a nutshell I don’t know what does. My body finally saw a chance to rest and it got sick.

The last nearly two weeks have been spent trying to be productive and get what I need done, mainly from laying on the couch. They have also been spent unable to walk unaided, collapsing, passing out. Unable to cook, which fortunately for me I had sufficiently meal prepped minus a chilli I had to make. (By make I mean put beans in a pan, put sweetcorn in the pan, put the jar of sauce in a pan and bobs your uncle).

I have ordered pizzas because I’ve not been able to stomach the food I have nor go to a shop to get the food. There’s been lots of naps. Lots of being unable to nap but feeling too unwell to do anything. And I mean anything.

I’ve had many symptoms I’ve not had in a while and it’s been scary.

The world has changed and horrible as it sounds it’s nice to not feel inadequate because of my ME. It’s nice to not have to deal with the “I can’t say no” when I’m invited somewhere that would likely give me payback.

It’s nice to not have to try to be a normal functioning 22 year old yet still falling short.

God has definitely carried be through the times. I’ve got through being sick before. I can do it again, as long as I put the work in. Take the supplements I have, gentle movement, slowly getting more intense as I recover from this virus (I mean slowly). The church. In terms of the physical space doesn’t exist right now for many of us, if not all of us reading this. But we can still find ways to worship and feel gods presence. I’m going to join an online service at 6pm tonight. Can these online services last pls! Faith is how I stay grounded.

This month has been a weird one. For everyone. But we’re nearly through it. The weather is currently glorious, although I’m currently in a dressing gown with my electric blanket on and my heating on… It’s sunny. And hopefully as spring and summer come in there will be more sun to come!

That’s it from me. How’s March been for you?

 

 

 

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!

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.

 

 

Eating disorders are more than the stereotype often reinforced during this week.

It’s eating disorder awareness week,  and having suffered from an eating disorder myself I always like to acknowledge it in some way.  To be honest this year inspiration is running thin. What with my current job destroying my mental health and meaning those eating disordered thoughts are creeping back in and this ME flare up which is relentless could god forbid I could just phone up and call in sick when I’m still climbing. That internalised guilt is real as well as internalised ableism.

Anywho on with the post!

I’ve been in the eating disorder recovery community for years, own recovery My own recovery starting in the summer/autumn of 2013. I’ve been through many a EDAW and had to deal with those before and after pictures. Before I knew better, I may have even participated in this trend myself.

But I feel as though these pictures, this type of awareness misses the point. It caters to the middle class white skeletal female version of what an eating disorder is. It caters to and perpetuates the stereotype which is not at all relatable or a representative depiction of eating disorders  as a whole.

This image and reinforcement ignores the fact that anorexia isn’t the only eating disorder, as well as that anyone can get an eating disorder. Anyone of any race, size, socio-economic background.

Most dangerously these pictures continue the misconception that an eating disorder is just about weight. This is damaging on all counts but most importantly on the likelihood of and the success of treatment for the disorder. I know myself, only a tiny part of my eating disorder journey was spent underweight and less of that was spent emaciated. I did have anorexia and further through my recovery compulsive exercise and orthorexia but this isn’t the case for the majority of eating disorder sufferers. Many more have bulimia, binge eating disorder or OSFED who may never become underweight or may be overweight. This misconception is also damaging for those who are underweight or who will in the future end up under weight. It can make everyone think they’re recovered when ED recovery is about so much more than weight restoration. An eating disorder is a mental illness, thus to recover the mind needs to recover and this can often take years.

Instead of posting images that focus on weight I believe we should take weight out of the equation and think about warning signs and symptoms of an eating disorder instead.

These can include:

  • Being preoccupied with weight/shape
  • Being preoccupied with food
  • Denying themselves food
  • Secrecy
  • Going to the bathroom straight after a meal
  • Constantly making excuses as to why they’re not eating
  • Not eating in public
  • Hiding food
  • Becoming withdrawn
  • Wearing different clothing than usual – i.e more baggy
  • Overexercising or exercising with the wrong motivations in mind.
  • Hoarding food
  • Taking laxatives/diuretics

There are many others, but these are just a few from the top of my head.  I personally use a traffic light system to maintain my own recovery. Green – alls good. Amber – I’m showing a few personal warning signs but not really acting on them. Red – I’m acting on my disordered thoughts. I find this really helps me keep check on myself.

I hope this helps raise some awareness and explain some of the issues with focusing on just one aspect of a very complex set of mental illnesses!