A profound statement at an Ellen Macarthur Cancer Trust event….

Again I find myself in a position of having so many ideas of what to write about and not knowing what to write… one is about exiting hibernation and how that really feels and what it looks like, another about my future, one about loosing a label and another about random conversations that become quite profound and life changing as well as some others too. This post is about something profound but it wasn’t said in a conversation. It was a statement. Which I know is going to change me!

Two weeks ago, or so I got the joy of going to London to an event for Key supporters of the Ellen Macarthur Cancer Trust. I was there to talk about what the trust does, encourage people to get more involved and to thank people who were there for their support. Along with this I was there to help introduce the evening.

I had spent the morning hooked up to a drip in Cardiff hospital and the evening in a very swanky building Trinity House in London, just a stones throw away from Tower Bridge and the Tower of London. I was on my very first day of being antibiotic free (reminds me its Monday I need to take my antibiotics haa) after spending the last 5 weeks on the stronger antibiotics 3 times a day every day- rather than 1 tablet 3 days a week like I am now…. I really stood in awe taking in the Tower of London at the amazing double life I get to lead. How blessed I am to be alive, and experiencing all that I get to. The evening was amazing and it was so special to be able to share what the trust does and how much its changed me as a person and impacted my life. To see what the trust did last year please watch this The Ellen MacArthur Cancer Trust looks back on 2017  and to hear more about how the trust changed my life watch this… #12years12stories Part 4 . This puts it all into words more eloquently than I can typing.. (I just watched back my 12 years 12 stories and am now a blubbing mess so bear with and go watch it)….

In this video filmed about 3 years ago I said that every year I come away with something new…. I’d say this about every trust event I’ve ever attended to, its why I’m happy to go from hospital to meetings and events… I always have something to take away… 2 weeks ago I was sat in the audience listening to a group of my friends share about the impact the trust has had on them. One girl Claire Amaladoss (seriously cool name) who I’ve got to watch blossom into an incredible human and grow in faith and in leadership. She is also a very awesome trustee for the trust. Spoke and said something so profound and on point that it hit me like a train….. She said ‘We don’t pick up our lives to the full, because we know all to well what its like to have to give it all up…’ wow! I can not tell you how true this statement which she fleetingly made was so, so true. Its not only true but still very relevant to me today. The trust enables us to begin to pick up a life again, dream bigger and reach further again it rebuilds us in a way that no-one else can… but I sat there and realised I still had to do some more picking up to really live to the full again.

Recovering cancer-ish and from loosing it all is tough, it comes in waves, and isn’t something you can pick up where you left off…  it isn’t something that day one out of hospital/ remission you can physically manage to pick it all up. It comes with complications, life moves on but you haven’t. It comes with new struggles of how you manage with a life full of complications and long term follow up. A life with that lingering fear of loosing it all again. We have to mourn for the life we lost, the one we thought we were going to get and work out what sort of life we now want…. For any kid this is hard, but for one that has the dreams they have always had taken away- well that’s huge. I always thought I would be a teacher, one that fought for the kids who fall through the cracks, one that inspired a generation who had CAN’T shoved in their face and help them to realise that they truly could achieve anything. I’d worked hard, gained experience and knowledge that was set to equip me well into the future I believed I would always have. Getting sick meant I lost all this… after getting sick I got a complication that means my immune system just doesn’t work so teaching kids who carry all sorts of bugs and always get sick… well it was completely off the cards….

I hadn’t realised until Claire said it though at how fearful I was still about loosing it all. I mean I do still loose it when I get sick with the slightest bug, and it completely knocks me out- and in winter when meeting with people becomes next to impossible- but should this mean I shouldn’t live my life to the full when I can- NO! I actually need to work even harder than most to keep hold of my life in seasons where I’m ill, and push even further when I’m well to live… like really LIVE! I know I’ve still got a long way to go and I’ve already begun to action this in my life right now… I’m super excited to see what’s to come because I know  its going to be so big and so exciting. I’m obviously not going reveal what that looks like just yet but I’m really looking forward to reading this back in a year or two and crying because I’ll see just how far I’ve come- just like I was today watching the film back… at the point this was filmed I was really struggling, I was so tired and so unwell because 3rd year had taken so much out of me I had no idea what I wanted to do with my future, I spent the next year just recovering from doing the degree… now I look back and although I haven’t been anywhere near as creative or productive as I was then I do see how far I’ve come and I see how much the trust has played a part in that. Without the trust I’d never have returned to university, never walked out with a first class honours. I’d never have spent time sailing and really embracing all that this incredible sport has to offer. I’d probably still be the woe is me girl sat in a wheelchair…. I’d never have met some of my amazing friends who have really gone out and lived life to the full and I wouldn’t continue to be inspired by them and the amazing young people we support.  Like always I can not wait to get back out there this summer and see what I learn… but for now I need to prepare myself to be the encouraging voice to get people to sign up to come on one of these life changing trips as this is exactly what I’ll be doing tomorrow.

Just wanted to say a huge thankyou to everyone at the Ellen Macarthur Cancer trust you really have changed my life! I also want to say a huge thankyou to Claire, your words are always so timely and I cant wait to share with you how I respond to your challenge. To Karenza for interviewing me 3 years ago and most of all to Tom Roberts… thankyou for capturing the trust so well, and thank you for capturing that period of my life so incredibly- its now something I can look back on in awe just like everyone was telling me at the time, it is also amazing at how true it all I had to say then is still so true today.

Till next time….

Wen

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Hibernation

Hey lovely blog readers,

So again its been a while I guess my new years resolution to have more blogs kinda went out the window along with some other resolutions so I doubt I’ll be making any this year. However I’ve wanted to write something for the past few days and its always been about hibernation.

So right now I very much feel like an animal going into hibernation. I’ve been really bad at replying to emails, texts ect and I’ve only left the house for supplies and to go to church (even that’s a push some days). I’m feeling somewhat distant from my spring/summer self. I forget how much worse I tend to be in the winter months, infections increase and even though at times they are only minor because it comes at a time when I’m already feeling rough so even the smallest of things hits me. I’m finding the ‘hey how has your week been?’ and the ‘how are you?’ questions more and more difficult to answer. No-one likes a moaner (I hate it) but at the same time after spending 80-90% of your week resting really sucks when you know others lives are continuing at a normal pace, all you want to say is actually its been pretty pants but instead you go with the its been alright or the tentative mixed hand gesture.

For the past few weeks I’ve had really bad migraines (partly down to the infusions I have for my immune system), and although the headache part may only last a day- sometimes it’s a good few days before I’m feeling human again. Then the next one comes. Its been really naff because although I’ve not been anywhere near ill as I have been in the past they are hitting me pretty hard. So I just want to apologies to all those who have waited days for a reply to a text, or asked me to do something and I’ve had to flake.

Hibernation is not as glamorous as it sounds, and although I was always pretty envious of animals who hibernated as a kid, now I get to experience it- it’s a real the grass is greener situation. It very quickly gets boring, seeing the same 4 walls, Netflix as great as it is gets boring too, all you want to be able to do is go out for a nice walk or to have a catch up with someone but energy levels or that stupid migraine means you can’t. I’m really missing the coffee shops, and exploring my city. However, hibernating does mean that when I can I will, I’ll get to appreciate the small things again. I also know that this is just a small season in my life and I probably should be doing more to embrace it and to change the way I think about it. Hopefully in a few days time I’ll be doing just that but for now hibernation sucks and I cant wait for spring.

Until next time….

Wen x

Hibernate

 

 

Life as a long-term bum/volunteer

So tonight I got super teary over something that I don’t even want to discuss because it’s so pointless and I’m not one to share my laundry or ups and downs on Facebook (It solves nothing). So I have decided to look at my long list of possible blog titles and start writing as it helps even when its about a completely different thing.

So welcome to my life as a long term bum/volunteer. It’s both because I’m terrible at balancing and pacing in my life so I do too much of the latter and end up doing a lot of time as the former. As you know I struggle health wise with quite a few different things (mainly all as a result of my bone marrow transplant). I’ve recently changed the way I talk about it and boy has that helped lots. Now instead of replying to the What do you do? question with I can’t work because I was once really sick…. to I volunteer. Boy has that helped set up the conversations that follow it. (I’ve covered this in one of my earlier blog posts.)

However, today I’d love to give you an insight into what living this life is truly like. Pre summer I was doing loads with CLIC Sargent and was on lots of different groups, helped by representing them at things ect… ect… Over this summer I’ve done a bit for Ellen Macarthur Cancer Trust which take children and young people in recovery from cancer sailing. However with my last trip of the summer fast approaching I’m left feeling a little lost…. What will I do when this wraps up (and I’ve recovered from the sailing). The answer right now- I’m not entirely sure. (This is quite a scary thing for me but I know something will slot into place). I guess the unknown of whats next is scary because I don’t plan- because I simply can’t I have maybe 2 weeks in my head at a time- post that its normally waiting to see how long it takes me to recover from x or y… or simply too far off for me to think about. When I make plans and they fall through and its not me cancelling they hit me quite hard because I have to plan more than most to be able to do things… Thinking about pre rest time and post crash time. I don’t know why but takes me a day or so to think clearly about the reasons why things fell through, and why it benefits me in the long run as I can then do x or y instead- I suppose its because for some things that last 4 days I could have 2 weeks either side planned to prepare for it. However, this by no means that sometimes I can’t do things last minute either (I just have to be well first).

The life of someone with chronic fatigue is frustrating and something I wouldn’t wish upon anyone. It’s exhausting planning, preparing and pre-empting how many spoons (units of energy) your going to need. Its frustrating that after a weekend of doing thinks (a normal person wouldn’t think twice about) your so shattered you spend your evening teary over the most pathetic things because your just exhausted… In so many ways and sleep and rest is all you can do for 4 days+ so that when the next event/trip or fun thing on your to do list happens you have enough energy to actually do it. I wouldn’t change doing the things I do- and never want to stop doing things. I just really wish I wouldn’t have the crippling days (or weeks when i really overdo it) of paying for having a bit of fun or just doing something normal.

I’m struggling a bit if I’m honest with this life- well because its more like a half life… only able to do so much before you crash. I recently had a DWP fit for work assessment and it stressed me out so much I made no/ very little plans for about 2 months. I missed out on opportunities I’d normally jump at because my ability to plan like I would normally went out of the window. When it came to the actual assessment the assessor realised in reality not much had changed in the years since I was last assessed. While at the time I was a bit confused because I thought they had (they really hadn’t). You may see me on a good day- Yes sometimes I can jump and dance, sometimes i can walk to the bay- other times walking to the corner of my road is simply too far and getting dressed can take a life time. It can be really tough. Most of the the time I refuse to let on the hard side of it. I’m far too busy looking at life through the positive light and seeing the massive amounts of opportunities I am able to get, the time with friends I’m fortunate to have, the flexibility to rest around the things I want to do.

This ‘LIFESTYLE’ (as it was once described to me) of being on benefits, isn’t fun. It’s really not as glamorous as it looks (yes I have time to go for coffee’s) but the funds don’t really push to nice trips out, or holidays. It doesn’t mean that because I have the time- I have the funds or energy to travel to you and visit. It’s not a blessing to not have to work (yes it has it’s perks) but I would love to use this brain, and my skills to hold down a full time job. I would love to have the energy to do all the things normal people do (including working without fatigue), I’d also love to be able to say wow work was tiring today…. Instead it’s I got driven to lunch and sat for 2 hours now I’m in tears because I’m just too tired *but knowing sleep won’t help*.

Today, it got a bit much and the emotions of being tired and knowing I’ll be resting till monday so I am in Tip-Top form to go sailing got a bit big. I wouldn’t change for the Trust at all (right now it’s all I’ve got to look forward to). I wanted to let you all know- remember when ‘I look well’ or seem ok- one of  four things is happening; Ive prepared well and am ok, something weird is happening and I’m having a good patch, am hiding it, or I’m approaching a crash. Please remember even when you don’t see it, doesn’t mean it doesn’t exist.

Thanks for understanding (or trying to)

Wen x

 

Just thanks…

Today I had a check up at the hospital where I wrote the following…

In the waiting I sit, nervously, anxiously waiting. I sit and see others come and go one who is told the news transplant is the next step, another looks weeks out from transplant still tired and weak.
You see the same faces from the staff who have spent decades serving this nation. Trying to fit in the ever-growing case load of people. Sending for bloods, then checking your obs. These people reach out to see how you are. They have the answers or go to find them out, they see who you are and what your about.

As I sit 7 years on I still get this fear that today is the day I hear bad news. I see a familiar doctor, I’ve not seen in years yet now she’s a senior. I feel a sense of pride as I’ve seen her grow. she’s worked hard and boy does it show.
I glance and see my notes- sat on the pile with a post-it note. I know what it is I’ve seen it before it’s my protective consultant saying she is mine stay clear, he wants to see me again but still I ask why? Maybe there’s news.

A guy who is maybe 10 years older is the closest in age to me today. I sit and i wonder if his life-like mine has been impacted and changed. He gets called through and I sit and wonder what news will he receive.

As I wait all becomes quite, still and peaceful I look around and contemplate those missing faces- the ones I know I’ll never see yet still miss so terribly. I question why me, why was I so lucky. Why did it work for me but not for them.
The guy comes out smile beaming and I breathe a sense of relief knowing he’s happy. Knowing he to is one of the lucky ones.
Then the finger beckons, I stand and my heart races the steps into the room feel heavy and weighty. Despite knowing I’m fine there is still that chance. I stop for a second and take a big breath. I sit and he opens “well who’d have guessed your 7 years old!” I breath, today is not the day I hear bad news. I settle and begin to answer his never-ending questions, the ones I’m sure he doesn’t need to know as well as those I know he does.

I tease and he teases my consultant is not just a doctor, he’s a friend and a father. He knows me so well. He knows when to delve to ask the questions that make me squirm and when I need him to lay off and back down. I’m so grateful for him and I’m just blown away as without him I’d never have made it this far.

The questions are over and it’s now my turn. I talk life, my future my world for a moment he’s there protecting it all. We reminisce we laugh and I well up knowing that Thank you will never be enough. It’s more than just me it’s the thousands of others. It’s that thanks that’s unsaid, unheard or forgotten. It’s for those who we’ve lost but that I know you’ve not forgotten. What can you say to the man who changed everything. To the doctor that I know I’d be nothing without. I say all I can and again I say thanks.

Today I was told I’ll never be discharged that I’m there for life. For some this would be bad news but for me I breathed a sigh of relief because I know they will always be looking out for me. I was also told that travel is limitless and I could go anywhere again it’s like a door being flung open suddenly places I’ve only dreamt of could become a reality. (Now would be a great time for that lotto win). Who knows.
I’ve come so far yet still I know just how far I still have to go. I leave behind a man bursting with pride he did this, he’s the reason I’m alive. We hug and I leave thanking again as I walk out with a smile and a grin. I chat to the nurses who all played their part.
I tell them about how now I’d do it different from the start. That the 20 old me knew nothing and no-one. I wish at the time I’d had some more fight. I wish at the time I had some more life. Now I look back at the years that I wasted. I could have done more but instead I just … wasted. Instead of fighting for more I just didn’t want it. I wasn’t focused on living or striving for more. My life was over, no hope a disaster. I couldn’t see out and didn’t want different. I’d just moped and I moaned, I wallowed in pity. With no hope in recovery I settled for less. Until one day that changed and this I addressed. I now see things different and I hope for the best. I see the progress I’ve made and the miles that I’ve distanced. It was slower than most and I made that hard. It’s not simple or easy but I know I’m far from done. My life’s worth living I’m no longer a bum.

Smashed Glass

Well it’s been a fortnight since I last blogged (This blog was written yesterday whilst i visited the Tate). In this time I’ve gone through most items on the Fatigue list- including a complete burn out which resulted in me in another form of fatigue I forgot to mention the emotional 20p fatigue where the smallest thing set you off into floods of tears. That day I cried on the phone to my mum because I really didn’t know if I’d have the energy to get out of bed the next day let alone travel for my nephew birthday. I cried over the lack of sweetcorn at the harvester, cried that I’d spent energy resting waiting for friends only for plans to change. I cried because my glove didn’t go on my hand properly- I cried that my shoes were done up to tightly I couldn’t kick them off. It was the day I realised just how burnt out I was yet it came so out of the blue I wasn’t expecting it. Anyway I did go home and celebrate my nephew turning 2, I was exhausted and couldn’t do much to help party prep but I went and had 4 days where I got the car everywhere and didn’t have to cook or think about what I wanted to eat. Boy did I need it. Anyway back to now I’m currently sat in the Tate in London in a room I would say is my kryptonite (a room filled with radios all playing different noises) artwork by Cildo Meireles titled Babel

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I’m sat questioning why I sat down and why I’m choosing this spot to decide what I write about. Answers on a postcard to why this is… I’m a little stuck on what to write about because there is so much to be said I could write about how I’m missing out on meeting Gary Barlow tomorrow because I cant be at two places in London for two different cancer charities at once. I could write about how my cruddy immune system has meant this week I’ve been poorly- or how I got to catch up with some wonderful people this week  and the things they have taught me or about labels we as humans seem attach to people or even to ourselves. I could write about the impact Emily is still having on my life he tears I’ve shed today for her and that friendship. But instead I’ve chosen something that relates to the reason I’m here in the first place and why sat at the Tate I’ve felt the urge to write.

So on my way in to the Tate this morning I was drawn to a simple artwork of the everyday a pane of glass- this particular one is shattered yet not yet broken. I stopped to take a photo questioning why this I’m about to enter a world famous gallery yet this is the thing that stops me way more than anything in the Robert Rauschenberg and I love his work.

The reason I came here was I search of peace and quite time away time to be inspired and maybe even to reignite some big dream. Yet the pane of glass is still the best art I’ve seen all day. It’s set the tone it’s spoken to me in a way I never imagined (it’s also reframed some of the artwork  I’ve seen a thousand times for me today). See this broken pain of glass is all of us, me and you at the time your trying to hold yourself together you’ve not crashed yet goodness knows how because of all theses broken fragments are evidence of just close you are to falling apart. Yet it’s beautiful isn’t it? Just how strong glass has become to be able to stay together and I couldn’t help but be in awe of how the light picked up different aspects and turn this broken window pain into a thing of beauty.

Now the reason I am in London is to help open the eyes/reframe perceptions of the amazing trustees and senior team at CLIC Sargent about young cancer survivor/patients and social media. Now you maybe thinking how is she leaping from glass to social media but bare with… We live in a world where everything is at our fingertips we can connect with anyone anywhere in just a few clicks! This week I’ve spoken to friends all across the world through social media and for that reason I think it’s great! However it’s got its draw backs to- we all present the best versions of ourselves through it and have become a world of statuses, and tweets often tweeting before thinking… However, we also look through these rose tinted glasses at our friends lives and compare ourselves to people the other side of the screen. Thanks to platforms like Facebook we have kept in touch with everyone at all stages of life, like school friends whom 30yrs ago we’d have probably lost touch with. We now we see our acquaintances who are up and coming models, or traveling around the world, buying houses and got a family on the go. We’re constantly comparing ourselves and this needs to stop. Why? Because its not always 100% real. What’s the use of posting that fabulous beach holiday photo to keep up appearances when on the inside you feel like this broken piece of glass? We also never see the full picture we have no idea that 2 mins after that beautiful photo of the family the baby isn’t screaming at the top of its lungs and sleep deprived mum has had enough. We don’t know what that loving relationship plastered all over Facebook actually is. Flipping it slightly we don’t know how Jo from down the street will feel after reading the news your having a baby when she has just had to come to terms she can’t have children. Or that 2 months earlier the couple sharing this news lost a baby. We don’t know because it’s become unsociably acceptable to share these things (although at times we wouldn’t want to either) and then sometimes we have enough and share these things only to loose followers or get into a debate.

I am sat listening to babble realising its purpose- its demonstrating that we live in a noisy and crazy frenetic time now finding a small space of peace and quite is hard to find (especially in central London). Im noticing the people who are walking around head deep in their phones, or sat on the tube refusing to say hello- yet we aren’t designed to do life alone, we aren’t designed to not have conversations with people and create bable background noise. We’re are design to make connections with other humans and do life with them (the good, the bad and the ugly).  We aren’t designed to aimlessly scrawl through post after post, we aren’t designed to post EVERY thought (we all have that one friend) yet we are designed to do life together (sometimes virtually through social media). Tomorrow in the meeting we are going to be framing how as cancer survivors we have to make choices that others might never have to and how seeing a status about being pregnant or having an amazing night out might effect us emotionally at different stages of treatment. Im not saying in any way shape or form we need to stop posting on social media, nor would I ever want someone not to post good news. However a clearer more well rounded view of normal life would be nice sometimes.

I got thinking about that pane of glass again after seeing this img_1187by Louise bourgeois. I thought about how for the glass to be fixed and made new it’s going to need people to help replace this pane of glass and maybe this glass all broken will be recycled and made into a new pane eventually. But it also got me thinking about how it’s people that help us when we’re in this place of near breaking point. I want to say how its ok not to be ok at times and need a helping hand all you need do is reach out and ask. You don’t always have to post, and your posts don’t always have to only be the glamorous you either share the real you- its your real friends that will love you regardless.

Finally some key points to this post

  • If your not ok- thats ok. Find help wether that be a trusty friend, a helpline or a family member- you will be surprised just how many people care about you.
  • Start thinking before you post- do you really need a status for this?
  • If you get annoyed by a post ask yourself what are their intentions here? Am I overthinking or are my feelings heightened here?
  • Stop only showing a one sided view of your life- make it ok to share how your feeling- wether that be through a direct message to someone or a status its ok to be human!
  • Take some time out from social media from time to time, live in the moment you never know when you might stumble across a broken piece of glass that might speak to you in a way you’d miss if you’d have been attached to your phone.

 

Chronic Fatigue- A cry for understanding.

Hello 2017,

This year one of my many new years resolutions is to stop neglecting my creativity and in turn that means to stop neglecting my blog. I have an aim for 2 blog posts a month… I’ve currently got about 100 (No jokes I’ve counted) blog post ideas. However for the past two weeks I’ve struggled to know where to start- should it be about my new years resolutions, do I continue to write about the Cancer world or should I move onto something else, do I write about my learnings from my awesome church or do I do a little of all? Possibilities are endless… but then I got hit by a bus (metaphorically not literally) that is Chronic Fatigue syndrome and its knocked me for 6. After a conversation with a friend I realised most people don’t ‘Get it’ so this post I hope will explain a little what its like, and my experience with it. I also hope it will help my friends who suffer with it explain it to others but also give them some advice on how to manage it in the future.

So to start I should probably explain why people don’t ‘Get it’…. This week un-intentionally I’ve had people respond to me saying my chronic fatigue is playing up with ‘yep I’m tired too.’ I don’t want to be a pity party or to ‘moan again’ (also had that this week too) but I do want to share with you the difference and why saying ‘I’m tired too’ just isn’t the same comparison (however, I do get that your tiredness does exist and sucks too). Chronic fatigue is more than just tiredness- It’s a complete exhaustion an inability to do normal tasks and literally everything is an effort. (That’s the short answer anyway)

As you may know I was diagnosed with Very Sever Aplastic Anaemia in 2010 and had to have a bone marrow transplant immediately to save my life. Many who have had cancer and received chemo or radio will tell you about the fatigue being a huge issue and its hard to even describe it because fatigue is way more than just being tired for some this lasts for a few months others it just doesn’t go away. Over the past 6 years I’ve had chronic fatigue syndrome (chronic meaning extreme and persistent lasting over 6 months) and I’m way way better than I use to be but doesn’t mean it’s disappeared. I’ve learnt a lot and realised there are several parts to my fatigue some days I’m shocked because I can go all day without using the words ‘I’m tired’ but its rare these days happen. I’m fairly sure if you’ve spent any time with me over the past 6 years you would have heard those I’m tired words more than any other it was my catch phase for a while (but I try not to say it).

Before I go on to explain what the types of fatigue I suffer are. I want to explain a fantastic way (I often use) to explain what its like living with an invisible illness.  It comes from the fantastic Christine Misarandino it’s called the spoon theory. This sprung out from a conversation with her friend about her Lupus diagnosis (something my eldest sister has and we’ve often talked about the similarities between what we both experience). You can find the full article here.

Basically when you have a chronic illness like Chronic fatigue your forced to make choices to enable you to get through the day. Unlike healthy people who can enjoy limitless life without choices we don’t get that luxury. Normal people begin their day with a limitless number of options however life with a chronic illness means your options are limited, you have a certain number of spoons (the visual aid Christine uses). So sat in this café Christine hands her friend 12 spoons (her friend automatically asks for more but it doesn’t work like that so she said no.) She then asked her to begin explaining her morning routine she explains how each small task like getting out of bed would cost a spoon, having a shower another spoon, getting dressed another, the stairs another…. Thing is you could be through half your spoons before you even leave the house. In my case- Resting and eating food can replenish spoons (sometimes) but it depends on the type of fatigue. Her friend soon realised that skipping lunch, standing on the train spending too long typing would all cost spoons. It’s hard to balance life when your spoons are limited you have to choose between things like cooking and doing the dishes, or chores or having fun. You could be out of spoons by 1pm or it could be 9pm you just don’t know but once they are gone they are gone. Some people can borrow spoons from the next day, for me I can’t because my spoons vary day-to-day sometimes I don’t know until I’ve started my day how many I’m getting. I also don’t know when I might need some extra due to an infection. You learn to have a spoon in reserve at all times so you have enough to get you home if you need it.

spoontheorymilkandhoney

My life pre diagnosis was crazy, frenetic and super fast pace. Lazy wasn’t in my vocabulary. During my school years I would sometimes leave the house at 5.30/6 to go swimming, then rush to school have a full day often with a school club after followed by an evening activity whether that was swimming, orchestra or bell ringing there was ALWAYS something. Most nights I wasn’t home before 10. Lazy I wasn’t. It’s incredibly sad for me but I know that life is dead. I’d never be able to do that again. I’ve had to learn to accept a slower paced life. Its horrible and I will forever be learning how to balance it but it’s not something  I’ve had to adapt to. I hope that the normal people out there reading this understand just how much I’ve had to give up if you know me at all you know I hate having to say no, I hate missing out but I can’t do everything I have to choose what I want to prioritize each week and then each day. Sometimes I can do a crazy busy week other times one day will simply wipe me out (and by wipe out I literally mean it could take weeks for me to recover) problem is I often don’t know until it hits me which way it’s going to be. I want to let you in on what my life is truly like but please don’t think it’s a cry for sympathy because its not it’s a cry for understanding.

I want to tell you about my most resent experience with Chronic Fatigue Syndrome. At Christmas- it’s always hard the fast pace of life, buying presents in a way crazier shopping environment. This on top of a change in routine and a crazy busy few days for me and my family. I love it, however, its super draining, the almost 2 year olds 6am wake up doesn’t help (love him but sleep is a luxury). I would have loved to have stayed a bit longer because this year was certainly less draining than last year. However, the build up of lack of sleep, plus the pace of life I knew I needed rest and soon else burn out would be soon around the corner. I also really wanted to enjoy new year as my church threw a new years eve party. I came home and bed was home for me for the next 2 days. I had been invited to a friend’s birthday meal during the day on new years eve but I had very limited spoons so had to prioritise and stay resting (and colouring) on the sofa till moments before I needed to leave. I loved it and had a great time however, I got home went straight to bed and didn’t resurface till gone 12 the following day. I suffered brain fog fatigue all day and my flatmate cooked dinner- however I was too exhausted to do the dishes in fact I struggled to keep my eyes open during dinner. I’ve been slowly spiralling for the past 2 weeks. I’ve needed to be in bed (without screens) from 9pm most nights and despite falling asleep quickly I have been struggling to get up much before 10 (the only exception been when my flatmate has come in to wake me for church). The other day I went to Bristol for an afternoon volunteering with CLIC Sargent. I rested in the morning because I knew it was going to be a longer day. However, once I was home I stupidly decided to eat tea from the sofa (I should have gone straight to bed) I couldn’t move, the immobilising fatigue hit and it hit hard.

Have you ever felt stuck in your own body? No? Well let me explain. You lose the power to move because your that tired exhausted your brain disconnects from you muscles. Your telling your body to pick up a glass because your thirsty and it is literally 30cm away but your so exhausted you can’t get your arm to move. This was me on Tuesday night. I had to nap to be able to move up the stairs where in the painful fatigue set in. I sit on my bed unable to move. I sit waiting for the pain killers to kick in just to be able to get undressed for bed which takes so much longer than normal. I know that tomorrow is cancelled and any plans in the day need to be wiped because I would be unable to get out of bed at least in the morning. Finally I make it to bed- this process took from 9pm till 1 am. All just to go to bed. I turn all alarms off and attempt to sleep despite the pain- 12 hours later I wake up- not refreshed but exhausted so spend the next 5 hours in and out of sleep. The following night I’m in bed by 10 and sleep through till 12.30 yet woke up exhausted. Yesterday I spent the day in pain because of fatigue and unable to do the things I had planned. Now do you understand the difference between being tired and Fatigue? Most days I wake up as tired as normal people go to bed yet I have to live on that. My fatigue is not solved by sleep. Napping doesn’t always help because most of the time it’s not tiredness its full body exhaustion. I’ve no idea how long it will last but for now my chronic fatigue is bad. So sorry if I flake or cancel sorry if I can’t do what you expect me to but welcome to my life.

I’ve decided to go on and write about the 11 different types of fatigue I get (I may have forgotten some), some are rare some are I have most days but I’m going to try to explain them because I think its important to know why when I say I’m tired- I’m really saying I’m fatigued and basically exhausted.

Basic Fatigue

This I have almost every day. I wake up tired, I have to pace myself and rest often. I have to priorities what I want to do- If I push myself I know it.

Dementor Fatigue

This is people- and noise, multiple conversations going on at once. Yep you get it- like dementors (from Harry Potter) this sort of activity drains me massively it sometimes feels like life is being sucked out of me (hense the dementor). In group situations I have to be careful where I sit as if I have noise behind me I get drained. When I’m tired I find noisy places more draining. I also struggle to have conversations if multiple conversations are happening. I used to be that annoying person that could tune into multiple conversations at once- now my brain tries to shut out irrelevant noise but this is hard. At times this sort of fatigue leaves me unable to hold conversations and my body wants to shut down.

Immobilising Fatigue

This type is probably the hardest for me to deal with its one of the less common ones now thankfully (however early stages of treatment it happened a lot more) but when it strikes I sure know it. It can hit at any moment and you have no choice but to stop and sit down. It can literally paralyze you. You brain to muscle movement connection disappears and your trapped inside your own body.

Brain Fog Fatigue

Thinking takes longer, finding words is harder and it basically feels like your eyes up are covered in a haze that nothing gets through. Conversations can be difficult but you muddle through best you can.

Forgetful Fatigue

You know when you go up stairs but forget why you’ve gone- yep its this but with literally everything you try to do. A simple hello from someone is distraction enough and you lose your trail of thought. Complete conversations can disappear from you brain and boy is it frustrating.

Over Tired Fatigue

Insomnia if I miss bed time it’s almost guaranteed that falling asleep will be difficult and it doesn’t matter if there are no screens it could mean I have a seriously late switch off time and if I’ve got things planned the next day guaranteed it will come alongside at least 2 types of fatigue.

Over Doing It Fatigue

If I push myself too much or have too many busy days without allocating enough time for rest I’m way more likely to get burn out and the fatigues above at a sever level.

Poor Sleep Fatigue

Sometimes I don’t get enough sleep, sometimes it’s the quality of sleep, sometimes it’s the way in which I’m woken up but all mean I’m starting my day on even less energy than I need so will really have to be strict with what I do (this is what makes me flaky).

Infection related Fatigue

Depending on the infection will depend on the level of wipe out- but even the smallest of infection will increase the number of hours I need to sleep/spend in bed. Big infections knock me out for weeks.

Build up Fatigue

This is something that I suffer with most weeks, it’s where you keep going and keep going and then have to have a whole day resting because the basic fatigue along with all the other types just accumulate till you have no choice but to write of a day and spend it in bed.

Burnout

Fatigue has hit a new low, you have had a few days of build up Fatigue but now you haven’t even got the energy to shower and the shops which are only 900 steps away (yes my pedometer told me) are just too far if you’ve not been sensible and got in ready meals your living on takeout.

However despite all of these types of fatigue I deal with I manage it all pretty well most of the time. It’s all about Planning, Prioritising, and most importantly Pacing. Its tough but eating regular balanced meals and having a small amount of exercise each day helps- even if it’s just that 900 steps and back to the shop. I have a un written rule that I have to leave the house at least every other day- trust me it helps your mental wellbeing, your physical wellbeing and helps you get a better night sleep too. Don’t just take my word from it… Watch this.. Dr Mike Evans explains what you should be doing if you have fatigue in a way that would take me another million years.  So I will leave you with this….