Fatigue

Fatigue

It's a funny thing. And a topic that I write about from time to time. It's always there, following me around like a shadow.

There have been a few conversations in person recently that have made me think about writing about fatigue again. Just because I remember what I've written about in the past and the words and emotions used, doesn't mean that others do.

This isn't going to be a whinge or a rant. More of a reflection I suppose as I was talking about this at Bloodwise last week, and it’s been quietly circulating in the back of my head since. So I’m doing what I do.  I write about it and put it on the internet. I'm not upset or angry (anymore) about comments made in passing. So much of it is said without a thought of the impact. Because normally I don't react in the moment how I want to. Because it wouldn't be nice for the person.

I was saying to someone recently, I can’t remember when, a week or two ago, about how I have to have, ideally, 10-12 hours’ sleep and go start going to bed around 9pm. Their reaction – ‘lucky you! I'd love to have that much sleep.’   No.   Not really.  It's hugely restricting on my life. I don't see friends because I have to go to bed.  I can either do work in the day so I can pay bills or socialise.  I am constantly walking a very fine line between exhausted and able to get up and do what I need to do that day, and to not be able to.

Because I look fine, people don't realise the impact fatigue has on me. And the emotions I feel towards it because I only have it as it's a side effect of the chemo that I take. It's why I'm so desperate to come off treatment.  If I was cancer and chemo free, I would be fatigue free.

Fatigue is such a hard thing to explain. People try to sympathise and say I know how you feel. No one does really. Unless they also have it. The heaviness of your head and body. The scratchy eyes. The way you feel like you've been punched in the face. Or at least. How I imagine it to be; I've never actually been punched in the face. The way you have to mentally psyche yourself up to stand up. Get out of bed. Do whatever you need to do. Mentally coach yourself through the day. You can do this. You can do this. Just one more hour. Just 5 more minutes. Nearly home time. One more email. One more research paper.  One more task to do. One more cup of coffee. A little bit of chocolate. Another mug of coffee. This is, more often than not, what's going through my head.

I try not to think too much about how I will actually find the energy to do what I need to do. The moment I do that. It's too overwhelming. It's too much. I can't do it. I hate my life. The life that has been given to me. The loss of what I used to have. The fact that I'm so fucking restricted every day. 

And I cry.

And I smile when people ask me how I am and say. 'I'm ok thank you'.

I'm not really. But no one would talk to me if I said how I actually felt when they asked me. 

Online Dating - I Give Up

So.  Online dating round 2.  So many words that I can’t quite get out.  I’m a few years older than when I tried it last time.  I thought it would be better.  I know myself more.  I’m generally speaking happier with who I am now.  Better at not thinking I’m fat.  Better at not thinking I’m ugly.  Better at not thinking I’m not good enough.  I have worked so fucking hard to get to this place with me.  So hard.  People see this person, outgoing confident, which I am.  But there is also a slightly more fragile version of me.  A slightly more broken me.  It’s hidden most of the time.  It’s there though if you take the time to get to know me.  And you know what dating is really good at? Bringing the broken me to fore with my internal chat.

So I give up. 

Being alone scares me more than anything else in the world.  Not right now.  But in the future.  I don’t want to be on my own forever.  I don’t want to not have children.  I think I might have to seriously start considering this as my reality.  And I can’t bear that.  I’m so desperate for a family.  Maybe too desperate and it’s off putting.  I don’t know.

People tell me that I’m young and I’ve got so much time.  No I fucking well don’t.  I can’t just have a baby when I feel like it.  It’s going to have to be a very clinical process.  An agreement between my consultant and I that I can take at least a year off treatment.  Get my fertility tested.   At the moment, that’s not possible.  I don’t know when it will be.  I don’t know how much of a fight it will be.  And that scares me.  I also don’t want to be an older mother.  I don’t give a fuck that many are.  That’s not what I want.  In 4 months I will be 32.  I don’t care that I’m going to be 32, I do care that in terms of having a baby time is beginning to run out.  Very quickly.  I say I have a plan and that I will do it on my own if I have to; have an IVF baby and hope that my body will support a pregnancy.   I will do this.  That also scares me.  I don’t really want to do it on my own. 

So dating.  I thought it would be a bit of fun.  I’ve been pretty relaxed about the whole process.  Tried not to get upset when I get ignored so much, or people who I’ve been chatting to suddenly disappear before we have met up.  Tried not to mind that when I have met up with guys and I think there is something there and I get the ‘I don’t think there was anything.  Let’s be friends’ message.  Part of me wants to say fuck you, don’t be such a twat, was it because I didn’t drink?   But then.  I have lost too many in my life already.  Is it worth losing more who could be special just because my ego has been hurt?  

And then that voice of ‘ you’re not good enough, see, I told you, you are ugly’ pops up again. 

I’m trying so hard to break this pattern.

So I give up.

There was one, who might actually read this, I gave them my blog, might regret that now.  But actually, fuck it. Why should I censor myself, my mind, what I think just in case he reads this?  My blog.  My brain vomit.  My space.

And then I think it’s because of cancer.  It’s too much.  My mother told me not to mention it but it’s so hard not to.  It’s who I am.  I don’t want to lie about who I am.  Not show the real me.  Which I have done.  And apparently I’m too full on.  To confident and it’s off putting. 

So I give up.

I don’t know why this particular person has got under my skin so much.  There have been others who have preferred someone else to me and it hasn’t bothered me.  I was me with them.  I warned them I’m a bit of a lunatic, outgoing etc and they thought I was going to be different.  I was a shock.  I wasn’t what they thought.  I said what I thought.

And then I have my perfect person who I can’t be with because this universe hates me.  And I compare everyone to him.  And they aren’t him. 

So I give up.

I think I'm running out of hope...

XXX

Thoughts and my Cancer on Board badge

My Lovely Bloglets,

Well, as always a bit of an up and down week.  I was in a foul mood on Thursday.  Woke up irritated, felt fat, was weighed at the hospital, didn't like what the scales said and my consultant wasn't there.  So that wasn't a great  check up.  I've been processing and reflecting on my appointment and I think the reason it fucked me off so much was something the consultant said.  We were talking about how I feel and I asked if there are any trials where people are taken off treatment and kept off it.  There has been one if you take one of the drugs, of course the one I was so intolerant to 9 years ago, and half the trial participants are still chemo free 5 years later.  This is pretty amazing!  The thing that has had a negative impact on me was the the consultant said he didn't see why that couldn't happen to me.  If I took the standard dose for around 6-12 months to really bring down my Leukaemic rate.  I currently take, and struggle with a fifth of the standard dose.  So.  Fuck.  I was talking to my mother about this and she said maybe look at it in terms of if I was to have a stem cell transplant, the time that would take and that I would probably feel like shit but then it would be over.  This is true.  I would have to stop working and move home.  So.   I'm a bit upset that the consultant said this.   I know he was trying to be helpful, but he doesn't know me and how I don’t cope on the drugs….  Anyways.  I’ll talk to my consultant when I'm back in 8 weeks.  I suppose it is good to know.   An option.  I'm just getting my life going again in London and work is beginning to pick up, I don’t really want to have to stop it all and to move back home and be an ill person again.

I've also started on-line dating again which is definitely adding to the meh.  Boys.  Don’t fucking well ‘like’ someone on an app when you can’t talk to the girl unless she messages you first and then IGNORE HER! Ok, ignore me.  So much game playing.  It does my fucking head in.  Grow up and say hello back.  It’s been less than a week.  Let’s see if I make it to 2 weeks…

I suppose those have been the downs. There have been ups this week, 4 I can think of off the top of my head so I should focus on the good outweighing the bad.  It’s so easy to be self-indulgent though, especially as my fatigue has been really fucking awful this week.  Yesterday morning I got up after about 10 hours sleep and 12 hours of being in bed.  Felt good when I woke up.  Felt good when I made breakfast.  Walked a maximum of 8 minutes to the tube to go and meet someone and I felt fucking exhausted.  Ridiculous.

Anyways, the ups.  Going to the Bloodwise office to give my opinion about something on Friday.  I always love going there.  I heart them so much.  Seeing some wonderful twitter friends, even if one of them refuses to follow me on there because I'm shit at twitter according to him….

And the biggest thing this week to make me smile has been my cancer on board badge.  It has been fucking AMAZING!!  I have been offered a seat on every tube I have got on.  This means, well, I can’t actually put into words how amazing this is.  I don’t have to try and sum up the courage to ask someone to stand up or tell myself in my head repeatedly that it’s ok and I will make it to my tube stop if I'm standing.  I wasn't sure what the reaction would be to it because it’s quite small and I am visually user-friendly, but as always, the people of London have been fab.  I have had a few surprised/shocked looks, but no one has questioned it or ignored it.  Well.  Loads have, but there has always been one to ask me if I want to sit.  This takes so much pressure and worry off my travelling around London. 

And today, something that really cheered me up, speaking to my little blonde.  I miss her so much.

So I think that’s about it for today.  Tomorrow is the start of a new week and going to bed earlier than I did last week…

With love and hope,

XXX

So I did it. 4 hrs 57

Well my lovely bloglets,

So I did it. 4 hours 57 minutes. Just under the 5 hour marker and I think around 10 minutes faster than when I did it in 2012. 

I'm not going to lie. It was hard. It was really hard. I have a cough at the moment and didn't really think about the impact of running and coughing for 26.2 miles. It makes you hurt. A lot. And I think I did damage myself when I fell over a couple of weeks ago as my left knee began to whinge  around mile 15 which never happened during training. 

In some ways I am very sad and disappointed that I wasn't closer to 4 and a half hours. If only I had walked a bit less and upped my pace a bit earlier. Or eaten more jelly babies earlier. Or..... 

I'm going to do my best not to beat myself up about this. I look at others I know who did it and did it in a much faster time than me. And I forget to be kind to myself. I don't acknowledge how fucking difficult this has been for me this year. The fact that I have nearly withdrawn so many times. That I had a really nasty fall two weeks ago and was then ill with a virus. That my energy levels are shit and I just can't do everything that others can.  

I would like to say that yesterday was amazing. In some ways it was. The person who saw me around mile 5 or 6 and yelled 'THERE SHE IS' and put his hand out for me and squeezed mine as I went by. I have no idea who that was. I'm assuming someone from twitter. Or someone who thought I was someone else.....

Tower Bridge. Always amazing. The charities go mental for you. The noise is amazing. And then my parents and brother at the end of it. And yes. I cried. 

The person supporting Bloodwise around mile 15ish I think who clocked me. Thank you. Maybe the stickers on my leggings worked!

The massive group of Teenage Cancer Trust supporters around mile 19ish I think. Just as I was coming out of a really shit 4 miles. For some reason mile 15-19 hurt a lot with more walking than I would have liked. Not a lot. But enough to slow me down. It was those 4 miles that changes it from a near 4 and a half hour run to nearly 5. My knee really began complaining and shooting pains were going up my left leg. And the aching from coughing. I was eating an orange segment and I heard this incredible noise. I looked up and there they all were. Cheering me on. And the running began again. And it picked up. 

Then the best bit. The north bank. You know the end is getting close. There are more supporters out. You can see the London Eye and Westminster. Birdcage walk and then you are done. And also, I can't remember when exactly, but overtaking the man in the rhino suit who sped past me in my shit bit. I thought to myself, no fucking way is a man in a rhino suit going to beat me!

So I had a good beginning. A fucking shit middle and a good end. I didn't hit the wall. I kept going. And I did it. 

I have all my toenails. No chaffing and my usual blister on one of my toes but nothing hideous. 

I'm sad to say that I truly think this was my last marathon. The training you need to do alongside working full time and dealing with the effects of chemotherapy are just too much for me. 

I want to say thank you to everyone in the Bloodwise running Facebook group for being so great. Thank you to all my wonderful twitter lot who have put up with my whinging, encouraged me and given, I would say, 80% of my sponsorship money. To all the people that cheered me on yesterday, for the orange segments and the jelly babies. The supporting spirit for the London Marathon is hands down the best in the world. I would never do it anywhere else. 

And finally. To my family. For believing in me and telling me that doing my best no matter what that is, is enough. And if I did withdraw it was ok that everyone would understand if I did. And especially to my brother who flew over from Singapore to watch me. It is they that make me who I am. 

So finally. If you haven't and would like to. Here is my link for two incredible charities who make having cancer just that little bit more bearable. 

http://uk.virginmoneygiving.com/KatherineRuane

With love and hope,

XxX

The Marathon and Me

Well my lovely Bloglets,

I am as I'm sure you are all aware training for the London Marathon which is in 24 days.  I have been training very slowly for, well in all honesty, since last January.  January 2015 that is.  Running as it does with me happens in waves and my last year of University removed all opportunities for me to exercise as I was so fucking exhausted from the work load.  So I knew I had to start slowly.  I was meant to do the marathon in 2015, that was the agreement I made with myself.  I'm not entirely sure why I picked 2015 in all honesty.

2012 I did London for the first time and didn't get the time I wanted.  I wanted to do it in 4.5 hours but a hot day, not forecast of course, and discovering that my Nike running chip miles were not in fact full miles meant that I crossed the line after just over 5 hours.  This of course meant that I had to do it again to get the time I wanted.  Because just over 5 hours isn't good enough....

I had to decline the place I was offered in 2015 because life and fatigue was just too much.  Living in a toxic environment with a truly horrible person and recovering from my degree meant that I simply couldn't do it.  So instead of thinking, ok, never mind, you have done it once, you don't need to do it again just to get the time you wanted, I thought fuck it.  I'll do it next year.

So I am.

It's been hard.  It's been really really hard.  Long runs in the wind - I can promise you, this year has been very windy - have meant that I have often had to fight off a lurgey after it.  Exhaustion has meant I have had to take breaks from my training.  Last weekend I was meant to do 20 miles and forgetting that 20 miles of running up and down hills fucks your knees as I was at my parents for Easter meant I only did 15 in the end.  Probably the equivalent to 20 miles on the flat.  But still.  Not 20 miles.  I was meant to do 20 miles yesterday but I have a virus.  I'm at my parents so I can be looked after and missing my sisters hen weekend...

I rarely get ill.  It happens when I am exhausted.  Really exhausted.  And I am.  Setting up your own business is fucking hard work especially when no one really gets what you do.

So I'm having to let go of my internal chat of beating myself up for not carrying on for those last 5 miles last weekend so at least I knew I had done 20 miles.

I have questioned a lot over the last few weeks if I should do the marathon.  Can I do it?  Is there a point if I get an even worse time than last time?  And then I think of all the people who have sponsored me.  The reason I am doing it.

I still have 24 days.  That's a long time. I can do one or two 20 mile runs and have a week off before the day.  I will have shifted this virus by Monday.  It's just mind of matter anyways, isn't it?

And then yesterday I was sent this link to a video I was filmed for Bloodwise and it reminded me of all I have done, of all I can do.  https://www.youtube.com/watch?v=jbUqoZlfZc4&feature=youtu.be

So I will.

http://uk.virginmoneygiving.com/KatherineRuane

With love, hope and determination,
XXX

I Am

Well my lovely Bloglets,

I have over the years since my diagnosis had a lot of therapy. Initially I went to see someone to talk to, to help me process and resolve all the emotional things that have happened because of my diagnosis. I have learnt over the last 9 and a bit years that in actual fact a lot of what upsets me now is linked to childhood trauma whether big or little. This is the case for most of us. By chance one day I was watching something with my mother (who is also a therapist) around 7 and a half or 8 years ago, and I got upset by something and she did some therapy work with me. Since then she has been my go to therapist. Potentially a bit weird. But. It works for me. I am honest with her when I wasn't with a stranger. 

I have linked my self taught belief, well the most prominent one, of not being good enough back to something when I was really little. An event completely out of my control happened and for some reason I took the responsibility of someone's happiness onto my own shoulders. I couldn't make them smile, stupid though this sounds to a rational adult mind, and this made me think I'm not good enough. 

This theme runs through my life. For example at school being told I wasn't clever enough by my English teacher to read the book I told her I was reading. I was 11 and I think reading an Austin book. It took me until I was 16 or 17 to read 'proper books' by choice instead of trash. (Not that there's anything wrong with trash). 

At school once again, I excelled in the classroom and then repeatedly didn't get the equivalent grades in exams much to my teachers puzzlement. 

In relationships. Until now I have been the in between girl whilst the guy doesn't actually want a girlfriend, but doesn't want to be alone, and then they end it with me when someone they actually want to be with comes along. Or I attract the emotionally unavailable and they aren't ready. Until now I have thought it's because I'm not good enough. 

I could list other examples but I would be here all day. I just wanted to highlight a bit of my history. 

So now. I choose to be good enough. And the way I am going to do it, is of course to put it on the Internet. Because that's just what I do. 

People tell me I'm amazing all the time. I smile, say thank you and then tell them why I'm not. Today that stops. From today I shall just say thank you and believe what they say. 

From today I am going to give myself credit for all I achieve. Because I have achieved a lot. 

• I carried on with Uni after my diagnosis. I wanted to graduate with my friends and I did. 
• I moved to London. 
• I look after myself. 
• I was brave enough to quit a job that made me fucking miserable and went back to Uni to train as a Naturopath. 
• I have set up my own business and I am achieving amazing things.
• I have continued to believe in myself and my business when others have told me to get a proper job. 
• I haven't changed my pricing to encourage more people to see me because I know that I am worth the rate I charge- I didn't spend 4 years training to charge only £40 an hour. 
• I have run one half marathon, one marathon and about to do another. 
• I have inspired people to do great things for charity.
• I have an opinion that is sought after by the NHS and cancer charities. 
• I smile and laugh and see the positive. 
• I get out of bed everyday.

I do all this and more whilst dealing with chronic fatigue as a side effect of chemotherapy I take daily and have for over 9 years. 

I do all this living with cancer and all the shit that goes alongside it. 

I do all of this because I am amazing and from now on I will truly honour what I have done and what I continue to do. 

I also do this because I am surrounded by a fucking amazing family and friends. 

And if you really want to make me smile you can sponsor me. 

http://uk.virginmoneygiving.com/KatherineRuane

With love and hope, 

XxX

I'm Sorry. I Need To Get It Out.

Something has been circling in my mind, so I am doing what I do when this happens.  I write.  And then put it on the internet for strangers to read because that’s just what I do.

This topic is reoccurring depending on what’s going on, how I feel and general triggers.  I have been struggling with this for a few months now and have kept quiet because it relates to two twitter friends.  But I can’t carry on with it circling in my mind.  For me and my mental health I need to get it out.  So if you read this and it upsets you because you know who it is, or it is in fact you, I hope you can understand why I have written and posted this.

I feel ‘what about me?!’ a fair amount.  I don’t know if it’s linked to being a middle child or just because I’m attention seeking and needy.   It has become a feeling and thought that I have learnt to recognise since my diagnosis and do what I can to rationalise it and understand why others get and deserve more attention than me.  I do know that everything doesn’t revolve around me and I would never expect it to.

In just under 2 weeks it will be my 9^th Cancerversary.  9 years on chemotherapy.  9 fucking years.  I’m 31.  I have been on the drugs for nearly a quarter of my life.  Yes, it does mean that I’m alive and obviously I wouldn’t want to change it.  It’s just sometimes…..

A while ago an editor of The Times was interested in me and everything I have been through so I wrote her something.  She didn’t want it.  A couple of weeks later an article was published mentioning everything I did but that person was probably going to die, and didn’t have any hair from treatment.  A much better story than me.  Everyone loves a sob story.  Not someone boring like me.

On the subject of hair.  My hair is under half the thickness it used to be.  No.  I’m not going to lose it, but I notice that every single fucking day.  My grandmother said over Christmas that combfuls of hair are coming out at the moment due to the stress of moving and an ill husband.  This happens to me every single day and has done for 9 years.  When I mentioned that to her.  Nothing.  Fuck all.  Her response was something like, but it’s so long no one notices.  That’s not the fucking point.  I do.

One of my twitter lot has recently shaved her head for charity and has raised over £6,000, which is obviously amazing and the reasons behind her doing it are heart-breaking and I wouldn’t wish it on anyone.  I am running a fucking marathon with chronic fucking fatigue and I haven’t had nearly the same response as her.

I know I have chosen to do it.  I know no one has made me do it. I wish everyone really understood how fucking hard it is for me to do it.  It took me nearly an hour to get out of bed today….

So I sit here crying whilst I write this because I feel like a fucking horrible human being.  Another twitter friend is also running the marathon.  The day he announced it, twitter went mental.

What about me.

I know I’m still here.  I know I still have a life and can do so much.  I just wish at times it wasn’t so much of a fucking battle.

Maybe when people ask me how I am I shouldn’t smile and say I’m ok….

But I don’t want to be that person.

I’m sorry to whinge and complain.  I know I have so much.  I just sometimes wish I had the life I lost.

With love and hope,

XXX