Sometimes I feel like a burden… And I shouldn’t feel that way

I’ve just got up and got on with things for so long now. I’ve tried to leave an as normal life as possible. I’ve pretended to feel well when I’m not just to make things easier and to help me lead this ‘normal life’.

And it’s worked but it also has now got to a point where I feel like mentioning how I feel… especially physically, would annoy people.

I feel like whenever I mention that I feel a bit sick or am in a bit of pain.. I should feel guilty for even mentioning it.

It doesn’t help that I’ve come across some people who are clearly annoyed that I even bring it up despite me rarely ever mentioning it. I’ve been moaned at before and I’ve been told “well you look fine” and “you’ve coped with worse”. I’ve even been called selfish!!!

I don’t know why I should feel ashamed for being honest. I’m not saying I’m a complainer. If I complained about every single pain or discomfort or sickness I have.. Well I’d hardly stop complaining!

But I keep having to remind myself that it’s okay to have the odd moments to not hide my feelings. It’s okay to be honest.

Admiting that I’m struggling isn’t a sign of weakness. And yes, how I’m feeling may not be as bad as how others have it with other conditions, but it does affect me. Its horrible to go through. And sometimes I need that little extra support.

Sometimes when I admit that I’m feeling rough all I want is a cuddle or for someone to just listen to me and just be there. I don’t need people shouting or moaning at me, making me feel ashamed for feeling the way I do.

I’m human. I need to let these feelings out. I need to be honest sometimes with how my body is coping.

Yes i’m coping much better than I used to but I still struggle sometimes.

And some days I need to go about my day in a slower, easier process. Please don’t have a go at me for going slower than usual or perhaps not achiving the standard I would if I was having a good day..

My body’s signalling that it needs rest. Its more fragile than usual.. I need to slow down and build myself up again. “re-charge” if you like.

It’s okay not to be okay.

I wish some people understood that.

Realising I’ve made it

It’s funny… I’m looking back at old Facebook statuses and old photos from 6/7 years ago… And I still quite can’t believe that was me. I went through that.

Despite my positiveness and awful attempts at humour at the age of 15/16… I was in a dark place. Both physically and mentally. I think the fact that my life was on full on go-go-go mode being transported 2 and from hospital at least once a week for almost over a year… It kept me kind of sane. I didn’t have time to stop and process my thoughts. I was either in the operating theatre, having multiple blood tests and numerous cannulas fitted, or just trying to recover from a seriously bad episode.

Being on the go all the time, helped for a while. I couldn’t feel sad. I couldn’t show weakness mentally. I had to be positive, I had to make jokes. I had to persevere and cope as best I could. It was the only thing I could do.

Although it helped, it meant that there was a backlog of negativity, sadness and lowness just waiting to burst out.

And it did.

When everything slowed down, and physically I gradually ever so slightly recovered from the operations and the treatments.

I had time to think. Finally.

But now the real fight began. I wasn’t fighting for my life anymore. I was fighting for my mental health.

And it was scary. It was dark. And if I’m honest, it was much harder to fight compared to the physical fight I had.

It went on for a few years.. Slowly getting worse and worse. Until I broke down proper a couple of years back.

Fortunately, I had a great support around me. My friends, my neighbours, my family. All were there for me. Just as they was when I was fighting my physical illness.

With their support, their encouragement and motivation, I got the help I needed. I was able to channel and let out all those negative feelings. The stress, the anger, the anxiety that had built up inside of me whilst I was being pulled and poked physically.

One of the thoughts I had, which stayed with me for a while. And I always knew it was in the back of my mind when I was on the go. I just tried to acknowledge it, was the following:

“Will I ever be normal?”

I don’t like the term “normal”. I mean, what is “normal”? Average? Nah. I don’t want to be average that’s boring.

What I meant by “normal” in this circumstance is that I wondered whether I’d ever live a life like everyone else.

I remember thinking…. Will I ever know a life outside of the hospital? Will I finish school? Will I get a job/career? Will I be able to drive? Will I be able to go out and socialise with friends? Will I go on dates? Will I find someone special to be in a relationship with?

Just simple things like that, that most people take for granted.

I was really doubtful about all of this. The first time I first started doubting, I had multiple tubes in my stomach and in my arms. I was also bed bound and in so much pain and discomfort.

A life didn’t seem possible.

BUT.

I fought. I battled through. I strided my way past the physical challenges and got myself out with just one small tube in my stomach (which I’ve learnt to live with) and I pushed myself through the mental challenges..

And you know what?

I’ve made it. What seemed impossible a few years ago, I have achieved most of it. I am living my dream life. I’m in a job I love with the most amazing colleagues, I was taking driving lessons (stopped because of corona 🙄), Ive had so many socialising occasions the past few years with my incredible friends and family, oh and I’m in a relationship and we are soon to be celebrating our 1 year. ❤️

Do I hate what I had to go through before getting to where I am now? No.

Because its made me who I am today. A fighter who doesn’t back down. I’ve learnt from the past. And I think it’s made me a better person. And I am grateful that I now have a much clearer head and I know what direction I am going in now.

If anyone is wondering why I decided to write this post and how this has all suddenly popped up in my head it’s because I’ve been listening to the following… When I listen to it I think of the words relating to me and my illness. 😊

Its Christina Aguilera’s “Fighter” (please click on link below)

Lockdown update

Just a brief post to let you guys know how I’ve been coping in lockdown.

It’s been hard… I know it’s been hard on all of us.

I’ve not been able to see my family properly. Nor my friends. I’ve also not seen my boyfriend for 6/7 weeks.

The amount of times I’ve cried myself to sleep over the situation we are in is silly. I don’t like this situation at all.

HOWEVER

I am doing the RIGHT thing.

I am keeping myself safe.

I am keeping my family safe.

I am keeping my friends safe.

I am also in my own home and have many things to keep me occupied.

I am also still able to work (from home.. Obviously).

It’s not all bad.

I have noticed though, that my “bad spells” that I’ve mentioned in the past has become more frequent over the last few weeks. Within the last 7 weeks I’ve had 2 pretty bad, bad spells.

This probably doesn’t sound like alot, but to me it kinda is. 6/7 years ago I was having at least 1 bad spell a week and over the years I’ve managed – by fighting and pushing myself to live a normal life – to get that down to 1 every few months, if that.

I think the stress of it all is taking a toll on my body slightly. Also I’m not moving around as much as I normally would if everything was normal and I was able to go to work, go out with my boyfriend and friends etc.

I am trying to 1 keep my mind occupied (as I mentioned earlier – I am able to work – so that’s keeping me busy during the week) and 2 do a bit of exercise everyday. I’m finding the wii fit very fun and beneficial during these times!!

Also, has anyone else been having weird, vivid dreams lately? I have.

In fact last night I had one which really scared me😂🙈

I dreamt that I woke up one morning and one of my scars on my stomach had opened up😳😳.

When I woke this morning the first thing I did was lift my shirt up to check – luckily all is fine! 😂😅. I don’t think that is likely to happen as my scars should be well healed by now – it’s been 7 years!

Anyway, I’ll finish up for now.

Take care and stay safe.

Katie x

Update

Hello!

Thought I’d give a brief update as to what’s been going on in my life as I haven’t posted on here recently.

So currently in my life, I am still trying to adjust to this lockdown lifestyle. Like everyone I suppose.

I’m working from home still. And have been for just over 3 weeks now. I’m still finding it weird. Like I’ve always tried to keep my work life and home life separate. But now, that is pretty hard to do!

I do try and keep a routine to stop me from going insane. For example, my work hours are 9 till 5 (cue Dolly Parton.. 😉😂) so I make sure I only work within those hours. I turn my laptop and work phone on pretty much dead on 9 and turn them both off dead on 5.

I also make sure I have a few breaks in between working. To get fresh air, a little bit of exercise and have a break from the screen. Fortunately I do have people to talk to at home so I’m not completely on my own. As well as speaking to my colleagues on the phone, via email and via video chat, I also am able to speak to my parents and brother as they are around in the house too.

What else? Erm.. Well we’ve been doing the clap for NHS on a Thursday for the last couple of weeks. I really like doing because not only is it showing are gratitude and support to the NHS and all key workers, I feel like it is bringing people together. In my street, there is a few of us who go out. We all clap and also end up having a chat…. From a distance obviously. We have a little giggle and catch up. And I find it so warming and just so nice that we all have that moment once a week where we have a little get together. It wouldn’t surprise me if, at the end of all this, we’ll be having street parties! Now that would be amazing!

So yeah that’s really it at the moment. I’m missing people who I love and care about outside of my household. Friends, family, boyfriend, his family etc. We keep in touch through calls, messages and video chat (greatful that we live in an age where we have technology like this!) but it’s just not the same😔

Hope everyone reading this is doing okay and staying safe. Keep smiling, enjoy the sunshine, take care and speak soon!

K x