Immunology

The past few days I’ve been a zombie but a zombie in recovery its been really weird. I suppose it all starts with the confession, I gave up on my meds. It’s not even like I know I don’t need it but about 4 months ago I just didn’t want to stab myself week in week out to give myself an immune system so it wasn’t a complete nahhh I won’t do it. More it got in the way of my life. I would get a text from a friend asking to go for a coffee and I’d do it and say ‘I’ll just do my infusion tomorrow’… I sort of fell out of the habit. Don’t get me wrong now I hadn’t stopped completely (well not until that last month) I just wasn’t doing it every week. It got to the point tho that when I realised I’d missed 3/4 weeks in a row that it was time to fess up to the medics…. So I tentatively called them and explained where I was at. I knew I needed the control taken back off me and so I was really pleased to hear they were happy to have me back on day patient care once every 3 weeks to give me a break.

The medics got it 100% they knew where I was at and they kind of were expecting it. Telling other though some thought it was a sign that I couldn’t cope or was being an idiot playing with my health. (Yes I was but also I’m fine thanks I know my own body). Anyway Tuesday I went into adult immunology day unit (where I did my sub-cut training). I have always had my IvIG on the Teenage Cancer Trust Unit in Cardiff so was a little unsure on what to expect but my infusions on TCT never we quicker than 6hrs normally more like 9hrs. So I packed my bag ready to be entertained all day.

The differences… well TCT next to never had my immunoglobulin on the ward when I arrived at 9am… sometimes it hadn’t even been ordered. I walked into Immunology at 10 to 9 one patient was already sat being hooked up and my immunoglobulin was already on the side waiting for me (sometimes on TCT I could easily wait an hour and a half or more for it to come up from Pharmacy). By 9.03 i’d seen two nurses and my IvIG was up and running. I had it through my hand like normal but instead of a cannula they had it going through a butterfly needle…. So much easier to get in.

I had been warned that the infusion would go slowly due to it being the first time on it in some time. The nurse didn’t need her iPhone or spend an age working out the maths for rates- it was instinctive (mainly because they do it all the time) but you’d have thought this would have been the case up on TCT after 5 years of giving it to me, Lydia and the others. The rate was increased each time with next to no wait for a nurse to come and up the flow. TCT because of the larger social space and the number of people walking in at different times sometimes you’d wait 15 mins before someone could come (I get it 100% they are really busy- but occasionally you’d end up having to press the call button to get someone to come upstairs as they all vanish). However never in a million years did I expect to be told even on the slower rate i was kept on Tuesday it should only take 3 hours. Next time (in 3 weeks time) as long as I’ve had no major side effects (did get a migraine last night but had also drunk so….) it will take 2 HOURS!!!! How then did it always take SOOOOOOO long on TCT. My flat mate when I got home pointed out my infusions at home take me that long because of migraines and that’s once a week so if it only takes 2 hours once every 3 weeks that’s something I’ll have to weigh up.

There are pro’s and cons to IV verses Subcut and I’m sure when I’m re-weighing that up next month or so I’ll end up writing about that. I’m just a bit shell-shocked at the difference in care. This is defiantly something I’ll be discussing with my medic’s next time round as their has to be a way of improving the service when it’s offered through TCT.

Part of me thinks if it had been like this the whole time I’d prob never have switched to subcut in the first place… However I am pleased I switched because the alternative at the time was long days once every 3/4 weeks on TCT.

Recovery from my infusion was a little different than it use to be I ended up with a whole afternoon and evening free (this never happened before I’d usually get home and crash). However, I met family down the bay went on a boat ride wandered round the wetlands then went home and rested before going out for food. Ok so the next day I was a complete zombie and did next to nothing then a rest all day the following day so I could go celebrate someone’s birthday last night. Then it brings me to today which has been a slow day. I hadn’t quite realised how run down, worn out and burnt out I had become being off my meds however my email inbox marked with 450+ unread messages showed me just how zombie I had been. Now my inbox looks much healthier with 0 unread messages. I’ve responded to people who have been waiting months for an answer. So bad! I’m still in that groggy stage that doing anything makes me tired but I’m doing way better than I had been.

Hopefully by the next time I write I’ll be able to do even more and will be feeling much more like me.

Till next time….

Wen

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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.

One year at Freedom

So today marks the one year anniversary walking through the doors of Freedom Church in Cardiff. A few months back I wrote a post called the faith that rocked which explains how I got there and what I found when I was there. However, I can not write something to mark this special day for me. Freedom Church has changed my life around completely and I am so so so thankful for that, and all I have learnt in this past year.

Pre Freedom I had just finished an internship which I loved but also it showed me how far away from the working world I am. I was exhausted from trying to do something with my days (only managing 1-2 days of activity) and felt really low because now I realised working even part-time was further off that I had hoped I had nothing to fill my days with. So I walked into church pretty broken, lost and feeling quite isolated from the ‘real world’.

I selfishly went to freedom looking for more people (and you know what that’s ok at my church). I wanted to have people around me incase my flat mates moved and I was left knowing no one in the city. Today I look at my Facebook friends and I’ve gained over 100 from Freedom Church. These aren’t people I just know of, or spoken to once they are people who I’ve had proper meaningful conversations with and could tell you more than just ‘oh they go to my church’. What I have found at freedom is way more than a community of friends it’s a GIGANTIC FAMILY all of whom are there for me, fighting for me and cheering me on. Some of these friends are now in Mombasa, Birmingham, and Rotterdam all places my church has planted a new church in the time I’ve been a part of the family. Some have moved away for new jobs and a new future (even one amazing family starting a new life in Australia.) Today we had 168 people in church and that really challenged me because it means there are at least 68 people I haven’t had a proper conversations with yet. It’s exciting because there are more people to meet, hear from and get to do life with!

This week was a challenging one for me because I’ve had the brown letter of doom anyone who has ever been on benefits at any point in their lives will know the gut wrenching feeling that is having to go through the whole process again. I’d like to consider  myself as a fairly positive person but this process just ends up making you feel depressed, like you’re a scrounge and you have to admit how you truly are on a day-to-day basis its gutting (as most of these things I hide from myself or try to put a positive spin on). However, I was challenged by someone to be a bit more open and honest, so I reached out to a few people within my church. One met me for coffee so I no longer had to sit on my living room floor in tears (Thankyou Zoe). Another called me to check I was ok and then took me out the next day to take my mind off it (Thanks Amanda). I had a wonderful new friend who also knows that brown letter feeling make me feel instantly better just because she knew the feeling. (Thanks Katie). The She:FOCUS group I’ve recently become apart of have all stood alongside me, with a special shout out to Jess who has said she will help me with the form. Yes I’ve had some none church friends also be there for me (Kate, Hattie and Rach your all awesome to.) However, the day this letter came through I have been so so thankful to have God by my side and placing amazing people around me.

I could easily tell you all about these amazing people in my life and what they mean to me. I had Hattie come and stay a few months back and I literally spent 2 days telling her about different people in my church and how INCREDIBLE they truly are but the blog post would just go on forever. I guess the purpose of this post is to say a huge THANKYOU to my wonderful freedom family. I’m so grateful for each and every one of you, for the endless hours of chatting we do. The catch ups in coffee shops, in cafe or in any one of our small groups. Thanks to you I have great role models, I have people who inspire me, and people who challenge me. I’m far from finished, I’m far from perfect but boy have I changed. I’m nowhere near as broken and isolated as I was. I’ve found faith, I’ve found community and I’ve found the most incredible family I could ever ask for.

God is good, all the time, God is good.

ps….Hey if your reading this and aren’t apart of my church family (this doesn’t mean I don’t love you any less). If your someone who is lost, broken or just searching for answers Drop me a message I’d love to help. If your someone who wants to know more about these amazing people ask me about them. If you want to know more about who this God is I’m talking about then ask me.

 

 

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.

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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….

 

CLIC Sargent Takeover Day

So my day (on Friday) began at 5AM, with a ridiculously early start (earlier than I even needed it to be) but I woke up like a kid waiting for Christmas. However this mid November morning and there are no presents to open just a early train to catch so I got ready for my day and spoke to my half asleep flatmate as I left my house at 6am. Where am I you ask? I’m spending the day at CLIC Sargent HQ in London. Why? Well to take it over obviously!

The idea for today came up quite a while ago in a Participation Group meeting (I’d like to say it was probably my idea but I can’t even remember) Kate Lee (our usual CEO) Had previously taken part in takeover days at a previous charity and was also keen to see it happen at CLIC Sargent. We looked at ways in which it could be achieved and when would be best today (Friday) seemed perfect as there is a national #takeoverdaychallenge with the children’s commissioner and so plans were swiftly underway and today became a reality. So how did we hear about it?? Well it was decided that it would be offered to members of the YPRG (CLIC Sargent’s young people’s reference group, made up from people they have supported to inspire and influence the work and direction of CLIC Sargent) as it’s a big step to take both for us and the charity so this seemed like a good group to test it. So a post was put up on the Facebook group and emailed out to us all too offering us the opportunity to take part. In this post we were asked to express an interest for a role which were also listed. These roles were then allocated based on our expression of interest and so here we are taking over.

On our journey to London our Facebook group was alive- with so many exciting comments from hey guys anyone seen my company car (CLIC Sargent is a charity no-one has company cars). To hey as CEO could someone go get me a coffee. It was fantastic especially to see emails from our social workers getting involved too asking for pay rises. Definitely the best way to start any day!

takeover

We began by having a briefing about what to expect from the day and got placed into our roles (at the end of the day we will do a sort of hand over back). We then had a tour of the offices as some of the group hadn’t been before and so we could get to grips with the teams and which director was responsible for them.

My role for the day has been as the Communications Assistant I have been able to learn about the role, which includes pulling together the daily news stories and sending them out across the whole of the charity. Dealing with requests for real life stories and quotes for news stories. Helping the teams to share their messages digitally and so much more! I don’t think I’d put much thought into what a difference one role makes to a charity I think I’ve always viewed it very much as a whole (despite interning with the charity last year where I developed a good understanding of how the charity works). My tasks for the day have been to conduct interviews with the CEO Fay Turner-Paxton and advisor to the CEO Kate Lee as well as the Director of Services Pete Jerrett and the advisor of Services Dara De Burca. Write a blog post about the day and a bit for the website, and to try to make contact with some local press to send out some content about today. Hopefully I’ll find the time to fit it all in but this is just such a small nugget on what happens within the charity on a day to day basis. The time really does fly!

Once I got to grips with the role it was time to spring into action and come up with some snappy questions to ask the CEO and Director of Services. I decided to be a nice journalist not asking too many difficult questions but it went really well. I learnt a lot about what it means to be a part of the day for them all and how already having young people involved has made a difference. I asked Fay and Kate how they have found today- Fay commented that she was quite nervous about how today would go but “it’s been a bit nuts and Kate has been amazing”. Kate Lee commented about how amazingly Fay has handled all of the people coming and saying ‘can I just have 5 minuets- and I’ve spent most of the day tweeting and being on my Facebook!”. Fay says she has learnt about how busy the charity is, a lot about how the charity works and has had some really good tips about chairing meeting and how to manage people.

dara-pete-and-me

Pete chose to become Director of services because he understood what the role was and has had a lot of help and support from the services team over the past 3 1/2 years of treatment. Dara said that “Pete has already been able to point out areas within the policy reports that hasn’t been seen previously and how they could have been presented better and he has asked some really good questions which is so exiting. Pete commented that “My hope for the future is that today goes so amazingly well that everyone thinks yes- lets do a takeover week lets involve the children too and that will agree that we want more participation opportunities like this.”

I had the unique pleasure of sitting in on the executive team meeting for the first item agenda purely as an on looker and to be able to write about it- and I have to say how immensely proud I am of all of my friends. It was incredible to see them place themselves into their director roles and so eloquently  getting their points across. However, looking round the table I saw the exact same look of pride on every single member of advisory staff in the room. Rachel raising the first item’s agenda so clearly everyone got on board straight away and the moment Brad (communications manager) spoke about an introduction of a new social media platform I saw smiles across the faces of so many. I’m bursting with pride of my friend Fay who herself would admit to usually being the quite one managing the meeting, keeping it to time whiles showing she was listening to everyone’s comments by summarising before moving onto the next item. It was like she had been doing it for years! Libby (Director of income and engagement) asking questions on how it would relate to fundraising. Aimee (Director of HR) answering Pete’s question about training for staff and raising issues of bridging the generational gaps. Honestly you wouldn’t have believed they had just had one hour of prep before this meeting because it was as if it was their normal jobs.

I’ve really loved being part of this incredible day and I can not wait to be part of the developing group for the next one to be a success for other children and young people to #takeover. Just would like to say a special thanks to all of the staff and young people that took part today

CEO- Fay Turner-Paxton (Kate Lee)

Director of services- Pete Jerrret (Dara De Burca)

Director of Finance and coparate resources- Connor Grant [WFH] (Kevin O’Brien)

Director Income and Engagement- Libby Welch (Rachel Kirby-Rider)

Director of People and Learning- Aimee Jordan (Jane Cooling)

Assistant Director of Planning strategy and performance- Rachel Blackford (Jenny Turner)

Impact and Performance Analyst- Tish Annand-Beanse (Michelle)

Project manager and EA to CEO and Chair- Seren Hughes (Diane Swanton)

Communication Manager- Bradley Gudger (Sally Archer)

Communications Assitant- Me- Ceinwen Stone (Rebecca Bourley)

And to our amazing participation team Rebecca Horder and Tracey Cosgrave.