Not held by fear

I’m definitely an ad hock writer but learning to be ok with that. Today in church we were encouraged to write out chapters of our stories and here is one from the last few month. It’s a long one but well worth a read.

I’m going to start with an apology not many knew I was facing what I am going to talk about today but I needed the circle on this to be small and I’ll explain why later.

So I’m about to go on a sailing trip with the Ellen Macather Cancer Trust in-fact I’m writing this from the train on route. It’s my second trip of the season my first being in April earlier this year. 2 days before I had a call, you know the ones you don’t want.

I’d had a scan in February, and the results got a little lost. But eventually I got a call in April, saying ‘we’ve looked at your scan’. I’m already in hyper drive! Thinking you don’t call for nothing. Come on spit it out… ugh get to the point… What is it? what’s wrong?! Still more waffle about how what they were looking for was clear but how sometimes these scans show other things…

Ok now I’m worrying it’s not my lungs, there is no scaring. This is what the routine scan was for. What is it?

They found an enlarged lymph node… if you’ve ever faced cancer you know where my brain was at right in that moment… ok so it’s fighting again then? Is it Hodgkins? I am at a higher risk, and that weird complication I had was early signs of this. My mind went straight there!

It wasn’t crazy big, but the radiographer had requested an ultrasound scan within 2 months (we were at that 2 month mark then). He says it could be due to an infection or it could be more sinister and with my history he wanted it checked. He want it done quickly because of the timeframe set by radiology. But thinks the best way for this was to have it in Hereford as if any follow up was needed it could be done locally. He also said it wasn’t an Immunology issue so they were handing it on. In this I heard we don’t think it’s infection related (as they deal with all this) and think it could be more sinister.

See once you face cancer you end up living in this place of a fear of relapsing. Living in the unknown and having the looming worry of relapse over you. You also become an expert in reading through the lines of the doctors while it’s hard to get their tone across in this I definitely felt the need for the rush to find out.

Within a few mins of putting down the phone I was a mess. In a place where my future was uncertain, and scared at how was going to impact this life I’ve finally started to get back.

I took a moment, and thought ok let’s be rational and rule this out. Have I had any other symptoms?

⁃ tiredness, yes but that could also be down to other things…

⁃ night sweats, ohh actually yes

⁃ Bruising, yep that killer bruise from Cyprus was still lingering months in

⁃ Itchy skin- yep

⁃ Unexplained weight-loss no but it’s the only one.

Now I realised this could just be coincidence, but instead of ruling it out it brought just more uncertainty.

Within a few hours, I’d had some people come around me and pray for me. I’d hit the practical mode of planning. Ok, so if I’m fighting it will still be early stages. I’d have minimal treatment and I’d be back to normal within 6months. I’d be ok… I could cope. Right when do I tell people? Who do I tell, how would I get to treatment? Where would I have treatment.

I called the Trust just so they knew where I was at head space wise for the residential trip. They said if I needed to or didn’t think I could they would manage without me. I say I’ll be ok and they say if you change your mind at any time let us know. I love the trust and how they care for their volunteers.

I arrive to big hugs from the team and a conversation about how if I need time out just to say. Throw myself in and forget about it.

Then just before going home I have a conversation with a young person about a scan they were waiting for, my advice to them was until you know try to assume it’s nothing, what’s the point wasting time worrying for what could be nothing.

I never realised just how hard this advice really was to follow, til I started to do it myself. Hitting reality of home, I was constantly checking the mail for the letter from my consultant to my G.P for scan referral. I let the waiting consume me. I spent the following few weeks calling doctors to chase things only to experience delay after delay of getting answers. Just getting more and more worried in the waiting.

I soon realised that this was a pointless waste of time. So chose not to let the fear or worry steal from me any longer. While this was a journey that didn’t always work. I chose to refocus each time on God knowing he has it all. Knowing that worry solved nothing so why waste my time with it.

In church and academy we sang this song called follow you anywhere by passion. Part of the lyrics are ‘there’s a million reasons to trust you, nothing to fear for you are by my side, I’ll follow you anywhere.’ One week we were singing this and I broke. Into such a blubbering mess, because I realised I’m singing this and truly meaning it. But that following God anywhere also means anywhere even back into the fight.

A week or so later I go on a walk with God. It actually felt more like I’d gone 10 rounds with Him. After an hour he says to me that I fail to have desires of the heart all because I’m too afraid of them being ripped out from under me, and while yes I was surrendered it was only because I had nothing to surrender.

The days that followed I went on several more walks and realised just how right this was. I was ready to fight but part of the reason for this was because although yes outcomes were unknown it would bring in a lot of known to. I’d be re-entering my comfort zone and the place I thrived, being a super patient who knew how to navigate through. This was my comfort zone.

I soon realised as I had a plan for if I was to fight I also needed one for if I wasn’t. I needed to put those dreams and desires in my heart again, and not be so afraid of loosing the things in my life that I refused to live. In this I realised just how long I lived in the fear of loosing it all.

Yes I’ve written about this before and I’m not saying I haven’t been living, or acting on this by going on the journey of truly living. What I’m realising tho is there is always more. ALWAYS MORE!

I won’t say right now what those things in my heart are. But for the first time in the longest time I can truly say I have dreams, I have aspirations and I’m chasing after them unafraid of them being swept away again.

Oh yea the lump.. It’s taken 6 months from my initial scan to answers. But I had a scan about 2 weeks ago and it’s nothing! NOTHING! The lymph node is still enlarged but completely within normal range, and so nothing to worry about.

Yes I cried when I left the hospital seems like even though I wasn’t letting the fear of future hold me. There was still a huge sense of relief that my future didn’t look like more drip stands and treatments.

I would have told people if it was something but I felt that worrying others as well was silly and unnecessary. I also decided I didn’t want to make a big deal about it and felt it would help with this.

Sometimes we are taken on unexpected journeys to unearth and uncover different things.

This chapter of my life has taught me

⁃ not to live in a place of fear or worry.

⁃ That my faith is strong and knowing I can trust God makes life that bit easier.

⁃ That not everyone needs to know every battle you face, for me this helped because I wasn’t constantly being asked for updates from everyone. It also increased my faith because I chose to lean on God in these moments more.

⁃ That doctors are over worked humans who can forget to send letters but be patient with them.

⁃ That I have a future

⁃ That I can really live

⁃ That it’s normal to have dreams and aspirations and these can be from God too.

⁃ That prayer works

⁃ Having people that speak life into situations of death and uncertainty is so helpful for keeping you positive and worry free.

#thisismystory #MyStoryHisGlory

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Cancer. It no longer defines me!

Hey lovely people,

Today is world cancer day and so thought it was apt to write this post today. It’s a topic I’ve wanted to write about for a very long time, and back in November I spoke on this at FYSOT (a Teenage Cancer Trust conference). I’m going to try and write more than what I chose to speak on, simply because lots has changed since then too. However, to start I’m going to talk about how and why I first started to loose the cancer label.

So obviously if you haven’t read my blog before you have guessed I had cancer, well technically I didn’t. It was a blood disorder called Very Sever Aplastic but treated similarly, so it was cancer-ish. For me it was an incredibly hard season of my life. I had to have a bone marrow transplant which basically strips you back to nothing, both physically and mentally.  It changes your life so drastically, and often quite dramatically too, that you loose who you are. Re-building your life after something like this, well its certainly not easy.

For me I felt like I had nothing, my life was a shell of what it once was. I had to suspend uni for a year and a half and even when I went back it wasn’t the same, I wasn’t the same. I had to adapt to my ‘new life’ and the restrictions that illness had imposed on me. I felt distant from friends, and felt that they lacked the understanding (even though they were massively supportive). I’d struggled with memory loss and PTSD and my mental health was in a mess.  The things that got me through this time however were incredible charities like CLIC Sargent, Teenage Cancer Trust, and Ellen MacArthur Cancer.

I will often say that cancer-ish whilst being the worst thing that ever happened, it was also the best, it changed everything. Incredibly I got the best help and support I could have ever imagined and I was able to rebuild a sort of life thanks to these incredible charities.

I finished treatment but walked into this sort of half life. Unable to fully live due to the complications, late effects and long journey of recovery that I was on. So while normal life was still a way off, I decided that the best thing I could do was to immerse myself into the cancer world. This had me in a place with people that understood and where expectations of me weren’t too high or unachievable.

I felt that once I finished treatment, and returned back to university that I’d moved on from cancer. I thought I was done and as much as I possibly could moved past it. After I finished uni I was pretty sick still. Around the same sort of time 3 years ago I walked through the doors at Freedom Church. I was really unsure on where my life was heading. Especially as the internship that I was doing at the time with CLIC Sargent, simply proved how unready I was for the world of work, due to my late effects.

About a year in (maybe longer) someone at my church came up to me and said I just think you really need to loose the cancer label. I was furious, I didn’t see it. I thought I’d already lost it, and was really angry about it. I’d moved on as much as I possibly could and thought ‘how dare she say this when she knew nothing about it’. I avoided her for a good 6 months, but then someone pointed out to me that if it wasn’t there how did someone else see it?

So I began investigating how I portrayed myself, and then I realised. When introducing myself to anyone I’d ask what do you do? When the question was thrown back at me- I’d respond well I can’t work because of the late effects from cancer-ish. The problem with answering a question in this way was that the questions that followed were never about what I did get to do, but always about the Cancer and the late effects I suffered. So when I realised this, I started to change the way I talked about it, simply talking about the volunteering that I did. Its was amazing when people knew more about my sailing than the days in bed I had to take. Changing how I talked about it changed everything so much so that about 6 months later one of my newer friends had no idea that I’d ever even been ill. I was no longer held by this label of Cancer-ish!

Fast forward to November when I first got asked to give a talk at first I didn’t want to do it. I wasn’t up for telling the sob story and wasn’t sure about emerging myself in a world full of people who were still living that story. With EMCT its completely different- because its about building confidence and learning a new skill, getting out of the cancer world bubble and finding yourself again. This conference however isn’t about stepping out its more about relating to others.

I decided to do it but not just to be another story where you hear about the dodgy diagnosis or moments you nearly died. But one of life change even when the odds were stacked against me. Even when I hadn’t recovered like others had, after all I still had chronic fatigue, memory issues and no immune system. I talked on loosing the cancer label and how changing my language around it changed so much. What is so amazing is that I still have people reaching out now or commenting how good a talk it was for them. By sharing insight into the small changes I made its helped way more than just me.

 

 

While I was preparing I asked God (yep I’m a christian too!) to guide me in what to write which he did. I’d never have chosen to talk so openly about my mental health without his nudge. However not only did God show me all of the areas I had worked through and overcome. Like how changing the way you speak can change so much, or that I’d defied the odds time and time again and stepped out into new things like the course I’m doing now. He also showed me all the things I still had to work on like loosing the crippling control issues I had. Speaking life and not sickness over myself, getting bigger vision for my future, and believing that I do have a future. He showed me how I’d let the fear control me, and how my health and wealth were intertwined (I’m sure at one stage i’ll explain all these a bit more).

I can now honestly and truly say that control plays way less a part of my life now, I’m happier and healthier than I’ve ever been and I know more is to come! Illness doesn’t define my outlook any longer (which doesn’t mean I don’t still face it- but its in a completely different way). For the first time in 8 and a half years I can say that Cancer doesn’t define what I do. That cancer label which yes will always be apart of my life no longer has a negative impact on me or my life.

I can truly say I’m Thriving not just Surviving.

I can’t wait to see what my future holds, but one thing I know for sure is I will keep going and will keep sailing as its a great opportunity to inspire and help others.

All the best

Wen

ps. If your one of my cancer friend reading this and want to know more please dm me and I’d love to talk more about what I shared. Go loose that label! thrive.jpg

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

 

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.

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….