This blog is about my fight against adversity. It will cover my story, my struggles with my mental and physical health, and will also cover things that I feel help me overcome and fight my battles.
I had an appointment today to attend Kings College Hospital for an X-Ray of my abdomen. This was an appointment that got arranged following me chasing up a doctor last week.
You see, I’ve had ongoing issues with my tube leaking. (If there are any other peg/tube feeders out there who have also had leaky tubes then please feel free to share your experiences and advice. It would be much appreciated 😊)
The leakage was bad before I had this new, longer tube put in. I thought having a longer tube would resolve it. But it hasn’t unfortunately.
Up until today I believed it was because the tube had moved into a new place. (Its supposed to be in my bowel but I thought it moved back up into my stomach)
But today has proven that the tube hasn’t moved and is in fact in the place its meant to be.
This is a good thing as it means I don’t have to go through the hassle of them removing it and doing it all over again. But it’s also a not so good thing. As part of me was hoping to hear that it has moved as that would be the explanation behind the excessive leaking. But now I still have no idea why its leaking so much.. Still.
The other option as to why I’m still having troubles could be that the infection I had back in May is still around and so causing build up of fluid and stomach acid in my stomach.
I was given antibiotics to fight this infection following it’s discovery but didn’t have a follow up to find if the infection had gone.
I am currently chasing this up and unfortunately it is proving a challenge due to delays in communication. But I’ll get there… hopefully.
I currently feel lost as I just feel like there is no way out of this situation.
There’s been another appointment arranged for next month to discuss with another consultant further options available to me. But I doubt theres going to be much, if any.
I’ve coped for so long with the discomfort of the leaking. The constant changing of clothes, the not being able to wear certain outfits in case of leaking, the constant changes of dressings. All probably small things to some. But it takes so much effort. Sometimes I don’t bother. Then I feel uncomfortable and unclean so have to have a shower to clean myself up.
I’m half just settling on carrying on as I am, not bothering to keep crying out for help as I don’t feel like I’m getting anywhere, and half wanting to keep pushing. Keep trying to get my voice heard.
It’s starting to really affect my “normal life”. Its affecting the way I think, the way I act. Everything.
If anyone can help. Anyone with peg feeds, tubes etc going through similar. It would be very appreciated!
Earlier today I had a call with my consultant. Turns out my new tube has possibly moved position so gonna have to maybe go back to have another x-ray and possibly have it re-done. It’s okay though. I can do this 👍
I posted on Instagram and Facebook the above as well as a selfie of me with my thumb up.
Because I know deep down I can do this.
But my feelings on the surface are not the same.
I’ve been crying ever since that phone call.
It’s only something small that can be easily amended.
But to be easily amended means more hospital visits, more let downs and probably another painful, horrible procedure.
And of course if this doesn’t work it means back to my old tube. Which means I am to continue suffering with the leakage.
At the moment I feel like there’s no way out.
My condition is always going to be around. In whatever shape or form. There’s always going to be complications. That’s my life.
Deep down I know I can cope, and I know it’s no where near as bad as it has been or could be.. But I’m finding things a bit hard at the moment.
It is so tempting to just tell everyone, including medical professionals, that everything’s okay. That I’m thriving. Because if I did that, they’d leave me alone. Yes, I’ll have to struggle with the leakage and discomfort but at least I’ll have no hospital visits, no being taken out of my day to day routines with work etc and just my “normal life” in general.
I can’t win. I either choose to live a normal life but suffer with discomfort or try and get a result, try and feel better but have my normal life disrupted.
I’ve done it before. I’ve done it most of my life. But I like the normal day to day life. When a hospital visit happens, I dred it because I’m scared I’m going to get too comfortable with a hospital life again.
Has anyone got any tips or any words of encouragement?
I’ve got this… I keep telling myself that. I’m trying to convince myself that although things seem tough.. I am also tough. And despite the challenges I face, I somehow always get through them.
Recently with regards to my physical health, I have had trouble with my peg feeding tube.
You see, I’ve had this peg feeding tube for 8 years now and within the last year or so I’ve been experiencing leakage from the tract (the gap where the tube slots into in my stomach). This, in turn, has cause the site around it to be sore, uncomfortable and sometimes painful.
It started off leaking only a little but then it became more and more excessive.
(Sorry this next bit might be a bit graphic)
The leakage includs acid from my stomach mainly (this is a yellowy colour), contents of food I’ve digested, and sometimes blood.
It has been uncomfortable, painful, and super annoying (my amount of times I’ve had to change clothing because of the amount its leaked!)
I’ve seen many nurses and spoke to my consultant a few times about this. I’ve tried different size tubes, different dressings and creams to go onto the site around the tube due to the burns I have been receiving from the acid getting into contact with my skin.
Nothing has seemed to work and I’ve wondered why all of a sudden there is so much leakage!
I had an ocd (camera down throat into the stomach) back in May to see if there was any issue inside of my stomach that’s causing the excessive production of acid/mucus. From this, they did pick up an infection which I was given antibiotics for. But apart from that, everything else looked okay.
Before I went down for the ocd at King’s, I was seen by a peg nurse who examined me and asked me questions about the leakage. She prescribed me a cream and requested I see her in a couple of months time in her clinic.
So in July, I saw her in her clinic and mentioned that things hadn’t improved and that I was tired and frustrated that this issue keeps happening and won’t end.
She talked to me and explained that we could try and jejunostomy tube.
The difference between that tube, and the one I currently had is that a jej tube is longer on the inside and goes into the bowel. The one I currently had, and had for 8 years is a gastro tube meaning its short and just enters the top part of my stomach.
She reassured me that it all looked the same on the outside so the maintenance of it would be the same. I wouldn’t do anything any differently to how I’m using the current tube. It just means its got an extra port to feed with.
I was willing to give anything a go, and had been for a while.
She said that this tube is longer, and has a weight at the end so will pull it down a bit and hopefully make the tube tighter to the skin, thus closing the gap where my insides could leak out.
I agreed to giving it a go and was told it should only take about 20 mins and that this procedure has to be done in hospital under x-ray. And it has to be done every 6-9 months.
This was slightly different to how I was changing the other tube. The other tube, I was changing myself every 3 months in the comfort of my own home. This new tube meant I had to come in to hospital for a few hours to have it changed.
But that didn’t really bother me.
Anyway, the day came at the beginning of this month (August).
I arrived in a day ward, was given a gown and had a blood test done. I was then seen by the doctors who explained the procedure. Again, I was reassured it should only take about 20 mins (I didn’t quite believe that though.. when it comes to my stomach nothing is that easy 😅)
I was right to believe it wouldn’t take 20 mins.
When I was called down, I was wheeled into a theatre where they prepped me by putting loads of sheets of paper/plastic like material over my body, just leaving the area of where the tube is uncovered. An x-ray was hovering over me. They covered the area that they’ll work in, in an antibacterial liquid that cleans the area. They put protective barriers around my chest. I think this was to protect me from getting anything in my face, but also may be so I don’t see anything.
This scared me a little as it felt like I was having surgery. I mean, technically I kinda was.
I had to be awake for this procedure which I wasn’t keen on but I understood that there’s no point putting me to sleep. They wasn’t cutting me open or anything.
They began by taking a few x-ray images of the current tube in my stomach and planned out where they need to insert the new tube.
They then decided to numb the area of the skin around the site so that I wouldn’t feel too much discomfort. They injected me with local anesthetic This stung like a b!
Anyway, they went and did their thing. Took out my tube and replaced it with some wires which they inserted into my stomach so that they can use it as a guide when putting the new tube in.
Even though they numbed the area, I still felt pressure and occasionally discomfort inside my stomach as they prodded and poked.
All in all, the procedure took nearly 2 hours! Due to my stomach not being a normal shape or size, they had trouble finding the entrance to the bowel, which cause some issues.
I remember laying on the operating table trying to distract myself by thinking of nice things, thinking of what I’m going to do after like go for a coffee or something (I love an iced coffee at the moment!) The doctors and surgeons in there were talking to me, helping to try and distract. But occasionally I felt pain or some kind of uncomfortness which took me away from distracting. It wasn’t pleasant.
I was a bit of a wuss and did start tearing up. I was scared. I didn’t like what they were doing and to be working on an area of my body where I am the most sensitive and protective over… it was daunting! I couldn’t move either as I had to stay completely still.
I was so relived when they finally got the tube where it needed to be and it was over!
I was cleaned up and wheeled back into the ward. They wanted to monitor me for an hour or so and make sure I was eating and drinking before I left.
Once I was allowed to go, I couldn’t wait to get home! I did plan with dad (who came up with me), originally that we were going to go for a coffee down the road after but following the procedure I just wanted to get home!
It’s been nearly two weeks since the procedure and I can actually say that I’ve noticed a bit of a difference. I have still leaked a couple of times. But it’s not as much as it has been.
I have had a catch up with a doctor over the phone and she has advised me to keep an eye on it and any problems give her a call.
I also have a phone appointment with my main consultant on Monday.
It’s early days but I am hoping this tube helps, even by a small percentage. After all that it would be really frustrating if it has done nothing!
I am due to have it changed next February. I have been told it shouldn’t be as bad as the first time as they will have the new tube as a guidance.
December 2020 was the last post I accomplished on this blog.
To be honest I decided to give it up. I mean, there wasn’t much else to talk about. I ran out of ideas. I felt like my life was “normal”. Besides, who actually reads my posts nowadays?
That was my train of thought.
It’s only recently that I’ve thought about starting it back up again. I’ve had new insights and goings ons with my health, so maybe my life wasn’t as “normal” as I thought it would be.
I mean I have got a chronic illness after all. Just because I have a good spell doesn’t necessarily mean it’s going to last. With a chronic illness there is always something that creeps up on you .. mainly when you least expect it.
I feel almost scared to feel relaxed and happy as I know something is waiting for me round the corner.
I’ll give a proper update very soon (I promise) but a brief summary of what’s been happening for me lately includes; some big milestones in my “normal life”, my mental health declining and a new tube insertion.
I feel like I’m living two lives.. a life with a chronic illness and a “normal” life. Sometimes it’s hard to balance. And I’m not ashamed to say I’ve been struggling a bit lately.
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.
I’m going to go back in time again. Thought I’d do a review of my experience of having an NG tube.
An NG tube is a Nasal Gastric Tube that goes up the nose, down the throat and into the stomach. When it’s inserted a pH test needs to be done to test that its in the right part of the stomach. (this is done by using a syringe to aspirate stomach acid from the stomach and putting the acid on a pH scale bit of paper)
It is used for people who struggle to intake food and sometimes fluids orally.
Some people rely on this tube to get the nutrients they need as they can’t intake anything orally. In this case, a lot of the time these people end up having a mic-key button inserted. Which does the same thing but is more of a permanent, reliable tube. (although not entirely permanent – it can be removed)
I had a mic-key button inserted after so many months of using an NG tube due to the fact that, even though I fortunately can still eat and drink, I don’t orally intake enough to keep myself going (but I have got better with this over the last few years!)
Anyway, back to the NG tube.
Personally, I wasn’t too keen on the NG tube. It felt weird when it was inserted (I think it had to be changed every few weeks too – so I had to go through the discomfort of inserting regularly) and it didn’t look nice sitting on the face.
I learnt to try and embrace it – I had to. Despite knowing the looks I’d get, I still went out with friends, went to school and went to the shops with others, using all the strength I had at the time. I wanted to try and still lead a normal life whilst being in and out of hospital, having treatment to help build me up and having numerous tests.
I saw people stare at me. I saw people point at my face. I saw kids point and ask their parents what that was on my face. But you know what. I didn’t have time to worry about it. I just smiled and carried on.
There were times I’d look at myself in the mirror and briefly see a sick, horrible looking face. I tried wearing make-up but the tube did not make it look good. I cried sometimes looking at myself in the mirror thinking I genuinely look like a sick person. How did I get to this?
But then something would click…
I’d have a brief flashback of what I looked like just a few years earlier.. I had a sickness bug (well.. Back then I thought it was but looking back now.. It was one of the first signs of my body telling me something wasn’t right). During this ‘sickness bug’ I was laying in my mum and dad’s bed feeling weak and vulnerable. I turned my head to look at myself in the mirror. No joke.. I looked like a zombie. I had no fat or muscle on my face, my eyes had sunken in… The image still haunts me to this day.
This flashback reminded me of how sick I actually was and how much that tube was helping me become healthy. And how much I was actually rocking the tube!!! 😉😂
I took selfies – both smiley and silly. And I made jokes (including one which involved me panicking a student nurse by sucking my cheeks in as she was trying to asperate – I think that’s the right word! – my tube😂😅)
I learnt to embrace it… Until I finally had it removed and had the mic-key button replace it.
Yes, I embraced it… But I was so bloody glad to get rid of it!
The discomfort of inserting it, the itchyness and the rash it formed on my cheeks, all of which I don’t miss.
Yes, I still would love to be completely tube-free at some point… But I’m comfortable having a tube for now.. Especially as the one I have currently is hidden and not as uncomfortable inserting!!
Ive been doing a lot of reflecting recently. I’ve been thinking a lot about how far I’ve come and what I’ve achieved within the last 7/8 years.
I think it’s because this time 8 years ago I became really unwell and life started to change in a way I wasn’t expecting. I won’t go into detail as I think I’ve gone through this many times before on this blog haha.
I remember feeling scared, anxious, and worried of the future.
At one point I was worried that I wouldn’t have a future..
I’ve been thinking, if I was able to go back in time and see my younger self, what would I say to her? I think many people would like to go back in time and speak to their younger selves.
I’ve put what I want to say into a letter… Here goes..
Dear 15 year old Katie,
Times are hard at the moment. You’re not entirely sure what’s going on. All you know is that you have to keep smiling and laughing. (I know some of Dad’s jokes are bad but just bare with him… He’s trying😂)
You’ve seen many doctors and nurses come and go already.. And you’re yet to see more but don’t worry – they all want to help you!
You are unwell and have just found out or soon to be finding out that your organs are in the wrong place. The mention of operations and tests terrify you – but like your new consultant will eventually tell you – “hang in there!” And if you hear the words “organ failure” – yes there is a risk, but you have not got organ failure and you will not get organ failure as the doctors and surgeons will get to you before that happens.
It’s going to be a bumpy ride, I won’t lie to you. Some operations/procedures will work and some won’t. Unfortunately because your condition is unique no one knows what will definitely work but it’s okay because you will get through it!
Some procedures will seem like they work but then fail as soon as you feel like it’s worked – but don’t give up hope!
You’ll have junior and training doctors come to see you because your condition is unusual but don’t worry they’ll only examine your stomach and listen to your heart – you’re unique – embrace that! (you are going to get so many that you end up creating a poster/ price list for examinations of yourself – which the doctors and nurses are going to love!!) *get a free I met Katie mug will be particularly a favourite 😂
You won’t have the tube in your nose for much longer.. It’ll be replaced by a mic-key button (that’s what it’s called.. Its not what I’ve named it as many people you come across will think😂)
This is a tube that goes directly into your stomach.. Its not as scary as you might think, honestly!!
Use the support around you Katie. All your friends and family are there for you and want to get you through this! (and be prepared for many lovely cards and gifts – especially teddies! 😂)
Most importantly Katie, YOU WILL COME OUT THE OTHER END! You wont be living in and out of hospital forever. You will be back at school (I don’t know why you missed school work so much… You’re such a weirdo 😉😂) you will be able to go out with friends and family and socialise. (including going out for meals – despite not being able to eat a lot you will find away to still go out and enjoy food!) You will catch up. You will have an education, get some GCSEs, A Levels and qualifications in media and business admin. (You will attend 3 years of sixth form to catch up with GCSEs and gain a couple of A-levels as well as make new friends, 2 years of college studying creative media production – where you’ll have fun and meet some amazing people and gain more amazing friends! You will then do an apprenticeship at a local school – your first ever job!)
You do have a future. You haven’t missed out. You will learn to drive, you will get a job, you will get into a relationship (with someone who loves you for you, believes in you and knows your condition doesn’t define you). You will have fun again, you will laugh properly again.
If I’m honest with you Katie – the next couple of years, that’s not going to look possible, but please don’t give up – because it really is! Once the hospital life calms down and you’re starting to live a normal life – your mental health will be affected. It will all hit you like a ton of bricks, but please listen to your friends, your neighbours, your family to get the help you need. Because you are more than someone with a disability. You are capable of so much. You have a couple of limitations, and yes you’re left with scars and tube in your stomach but that does not define you!! You’re funny, kind, brave and beautiful inside and out.
You’re/I’m 23 now. I’m doing a level 3 apprenticeship in business admin at a family hub (you completed level 2 working in a school last year). I have been a relationship for over a year. I am learning to drive. I’m going out with friends and family (well was… A pandemic is currently happening… Long story😅)
Yes, you unfortunately do still have the tube in your stomach but you’re only using it at night – and some nights you don’t use it at all! You’re free during the day to do whatever and you are living a life. You have a few pains and sickness every now and then but you do manage! You’re still on medication but that’s okay.
I’m happy. I’m safe. I’m comfortable. And most importantly… I’m proud. I’ve come so far. You’ve got one heck of a journey to come and things won’t always be easy, but you’re going to make a lot of memories – most of what you remember will be nice, funny etc ones! And you’re going learn things along the way. The nurses and doctors at kings are fab – they become yours and dads friends as you build bonds with them.
Remember Katie; keep smiling, keep trying, and never ever give up – no matter how tempting it seems! Cry if you need to, scream if you need to, no one will blame you. You will get through the hard times. Let your cheeky, mischievous side out – you’re gonna need this side to help keep you positive.
You can do it!
Katie – your future self.
PS. Be prepared for uncontrollable hiccups – they start appearing out of no where and can occasionally sound odd and make people jump… (dad says some of them sound like a car horn in reverse😳😂)
Today I’m having a bit of a… Well a roller-coaster of a day I guess.
It’s been the same as most days. I had work (from home still) and just the normal routine that I have had for the last few months.
Although I did have one slight difference. I had a phone consultation with my dietician.
I have appointments with her every 6 or so months. Just to see how I’m getting on with my pump and how my weight is doing.
Fortunately my weight is stable (I weighed myself on our scales beforehand). I’m still struggling to put on the weight but with what I’ve been through and my natural build that’s kinda normal (although also slightly annoying haha)
As well as my weight, a couple of other things were mentioned.
For a while now I’ve been getting what seems like on and off infections on the site around my tube. It gets inflamed, sore, and sometimes extremely painful. I’ve been to the doctors numerous times about it and I’ve constantly had antibiotics for it. They do help… But only for a short period of time.
My dietician is getting concerned about how often I’ve been getting these so called ‘infections’ and if they are actually infections.
There is a possibility that the redness and soreness is just because the tube is rubbing against my skin and causing friction. In which case, she’s offered me to try a new tube – which she has sent me and I am to try next week (I am due a button/tube change next week – I do it myself nowadays)
If this tube does work, and stops the burning, redness and soreness- then brilliant! If not. Then she said it could be a problem/infection inside my stomach. In which case she recommends I talk to my consultant about having a camera down into my stomach to have a look (ocg – which I’ve had numerous times in the past!)
I am hoping it doesn’t come to the latter in a way. Obviously if it does, I wouldn’t refuse the test – I’d rather know what’s going on and find a way to resolve it. However I can feel the nerves I had years back when I use to have those tests, deep within.
I like to think I’ve moved on from that stage in my life so when something like this happens and I need to have tests or something, I dred it.
Why can’t I just be left alone to live my life?
Anyway. I’m trying to tell myself it probably won’t come to that. I just gotta keep going, keep smiling and carry on.
Another issue I have at the moment is that I have a stitch that has pierced its way through my skin. Basically I have still got a few stitches left inside of me from operations I had 7 years ago. One… Or since recently… 2 stitches decide to pop up and out of my skin to say hello.
It doesn’t hurt or anything. They’re just annoying and keep getting caught on clothing 😂.
I need to have them removed. I have coped with them for a while but I swear they’re sticking out more and more, and like I said. A second one has recently appeared.
I don’t know what’s happening but it has happened in the past. Previously, my consultant has just pulled it a little and cut it down so it doesnt pop out again (or in my case… A small while)
I need to have this done again. Either by my gp or consultant. So after a chat with my dietician, that is something I will be arranging.
So yeah. A few little hiccups but I’m still going and trying the best I can. I am feeling a bit low today because of the small knock backs and just want to cry, be left alone but also hug people who will let me hug them😂 (I don’t know what I quite want haha)
I’m struggling but at least I know I will get through. I always do.
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 mostamazing 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)
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!
Katie's Journey 