An inspiration of mine


Okay, so plaster on those happy faces, stick those smiles on tight, fasten your metaphorical seatbelts and here we go.

I have SO much to tell you but before I get onto all my not-exciting general-nonsense-ness of my life; let me tell you the story I mentioned in my last post, the happy one. I am still feeling a little grumpy to be honest, and more than a little foreboding at this coming weekend (long story!) but that’s maybe even more reason than any to focus on the happy!

So, unfortunately this happy story, (well maybe happy is the wrong word, proud? inspirational? im not sure!) starts sad. So some of you who have been following my story for a few months (thank you, you crazy few!) may remember I lost two of my grandparents this last summer, both my mums parents passed away within a few weeks of each other. It was horrible, and one of the most heart wrenching times of my life. Am not going to say anymore on that now, else I will blubber away – already a bit teary eyed!- but that’s the starting point of this story.

Before my Granny passed away she had mobility issues. She was very overweight, and therefore struggled to get around; and as she got more ill then her muscles got weaker etc and it was a vicious cycle. We had to come to the devastating realisation she would never walk again, even though she spent months in hospital rehab centres coming oh so close! But anyway, my mum and auntie invested a lot of time and money in converting her whole bungalow to be wheel chair friendly, and also buying things such as scooters that could go offroad, (so she could walk her dogs) and a lift thing to get the scooter into the back of a van without having to drive up a ramp (she was not trusted to do this!)

Anyway, we obviously don’t need these things anymore, and most of her things have been given to charity to help others who may be in a similar situation, but we still had this one scooter. I am not sure why this one had such an emotional attachment to it, but it did. And nobody could quite bear to part with it.  This, in essence, is the story of what they did with that chair, and why I am so proud of them. (Bear with me, it isn’t as dull as it sounds!)

When she was alive my granny used to spend long hours at this vets, with her multiple dogs but also talking to the vets and nurses, all of whom liked her, respected her, talked to her, joked with her, told her off and cared about her. She was overweight, scruffy and a little bit crazy but not once did they treat her like she was worth any less because of it, not once did they make her feel anything less than welcome, and I am grateful to them for that.  So when my mum went down there the other week with the cats and realised something was different, she got involved (typical mum!). One of the nurses basically had got very ill, nearly died, been revived etc and had ended up losing all use of her legs due to infection, I’m not sure if they were amputated or if she just can’t use them. Anyway, she had recovered from all of this, was in a wheelchair and back at work, trying to move on with her life.

 

So, my mum and auntie decided to give her this chair. It specially adjusted to carry extra weight so she can carry things with her, and is off-roading meaning she will still be able to walk her dogs when she wants to. I know it may not sound like much, but this was an expensive scooter and something the nurse currently couldn’t afford, and was something that could so easily change her life. They also bought it down to her, helped her adjust it and show her how to drive it, and promised they would come down again if she ever needed any more help – infact she is going down again on Friday to just see how she is getting on and help her drive it in the car park to feel confident.  Not only that, but they also gave her the lift which gets the scooter into vans, and my mums boyfriend fixed the scooter up , changed the battery and gave it a mini MOT for free to ensure it was safe for her.  They also said, if this doesnt suit you, or you don’t like it, dont keep it. Don’t feel oblige to give it back or to charity; sell it and use the money for yourself and whatever makes you happy and helps you in your life. And all of this not for gratitude , thanks, or praise but just to help someone who needed it. I can’t think of anyone my granny would rather it to  have gone to, than for someone to walk their dogs and live their life to the full, doing what they, and she, loved.

It may not sound like a big thing, but it was for them, and I am incredibly proud of them.  I am SO SO sorry for such a long post, and congrats to any brave stragglers still reading this far – but I just wanted a bit of happy, and a bit of awe in this blog because sometimes I think its gets too focussed on me and my little bubble of boredom, but I wanted to remember, and to remind you – that ordinary people can do amazing things and change someones life.

 

So, chin up, think of something you can do today to help one other person around you, even in a small way.

Be happy and I will blog again soon (a lot shorter! – anyone here DEFS deserves a bourbon and a stiff drink!)

H x

Just keep swimming…


I literally can’t even.

 

I feel so pathethic and crappy and awful and miserable and a million other words and I don’t even know why or how to make it better. Strap yourselves in for a long roller coaster of a post folks, I think now I have started its going to be impossible to stop!

I don’t know what is wrong with me, I am such a roller coaster of emotions that I can’t keep up with myself, and I am not just blaming the normal monthly hormone influx (although I have been noticeably more teary the last few days so maybe I should do hah!)

I am knackered. I got up at 6.20 with my boyfriend this morning so he could get to work on time (its a LONG train journey from his to work!) and am therefore knackered; but I was home by 1 after just 2 hours of lectures, and still couldn’t keep my eyes open long, I fell asleep on the sofa for an hour, and still woke up feeling beyond exhausted, unable to concentrate and also generally pathethic that I couldn’t do a single day – he does it every day and for so much longer and working so much harder then me. I am due to drive to my best friends later tonight to volunteer at her school tomorrow, but I am not sure I physically can stay awake long enough for the drive, nor be able to do it tomorrow. ANd that is pathethic. Why is my body so shit, between the illness, the medicine, the fatigue and my general personal failures how can I not function well enough to do this?! I was so sad recently about my lack of social life, and my boring life so now I am trying harder and have things planned and I can’t do them because my 80 year old body won’t keepup with me. I feel like a let down, I feel useless, honestly, what am I even contributing to anyone right now?

 

Issue number 2. I am irrevocably, totally and completely feeling down on myself, and that sucks. I know I am overweight, and that makes me feel shit. I have been trying so hard, yet today I felt so dizzy, tired and shit that I needed sugar just to get me awake enough to walk upstairs, so now I am not only a pathetic tired mess, but also a fat one. Fuck. I feel insecure in my relationship, but not because of any reasons you might think. I just don’t think I am good enough for him, I am too needy, I am not…special enough. He is the light of my life, and honestly I don’t think I know a better person than him, then I look at myself and see nothing worth being with, and that makes me feel like crap, because it makes me so insecure! Aside from that, just feeling shit makes me so needy, when he is at work and at times like this when all I can do is sit at my desk and have a little cry, all I want is a hug and a kiss; but he is at work, being busy, leading a normal life and I can’t get in the way of that. He is so much more independent than me, he doesn’t need me the way I need him and I find that hard to cope with; whilst also hating on myself for being so easily dependent on a man, I never had myself down as that kinda gal.

 

GOSH so much misery in this post. I can’t even carry on writing with the moans, because nobody needs to hear all this crap 😉

On the plus side, I have a happy, positive post to write soon- I just think now isn’t the right time to do it, because I am not in that kinda mood, and I don’t think I will do it justice!  I just tried to end this post on a ~this is my next 5 step action goal~ kinda thing, because it often makes me feel better to have a tick list of things to do, and just focus on achieving them and being able to see what I have done. But I honestly cant see a way to get out oif this. Love my boyfriend less? Care less? Get less close? Somehow cure myself of whatever is fucking with my head? Unfortunately I can’t, or won’t do any of those. I just need my guardian angel to wake up a bit, come back out of retirement or whatever and come help me out. I just need someone to prop me up, and help me out. Please.

 

Sorry for the complete and utter trainwreck of a post, but times like this are exactly when this blog comes into its own.

I hope you are having a better time of it than me!

H x

Decisions are my enemy


So I’m starting to settle into work, I could get used to the money and move out and enjoy life as it is 

Or I could do my masters and it be a massive risk and be broke and maybe stuck at home but maybe Doug an amazing course and getting me to a dream job and enjoying it so much more than what I do now. 

To top it off my tummy is fekmg weird and wrong. And my colonoscopy is on Tuesday. I am STRESSED and unsure about my future. 

Do I play it safe or risk it? Either could be amazing but both could be shit and trapping me. And I have to decide on my own. I wanted that masters, so badly. But now I am more tempted to stay. Help me. 

I feel too young to be making these decisions myself, ones that can truly affect my future so hugely and my debt and my career path. Gulp. 

H x

Soppy sap alert


I write enough negative posts, and am quick to turn to this blog when I am sad or something has gone wrong. But I also have so many happy parts of my life, but I am often too excited to write when they are going on! 

Anyway just don’t my hunira injection and say here needing a time out before I carry on;so is a perfect time to write! 

This weekend after work on Froday I skipped out on my work party and went with my boyfriend up to York; he picked me up about 7 from outside London (after getting awkwardly hit on on the train) and we drove up to York to stay with his godfather. It took us 4 hours, so we were both knackered when we got there! We slept so well ha! And then we got up at 6am to head to the CLA game fair; and luckily there was no queue! We walked around for a few hours (despite some rainy spells!) and did some air rifle shooting and some browsing of the shops and clay pigeon shooting (my first time! 6/12 hit, thank you very much!) his dad was working there so we said hi to him too; and met him for lunch although by this point we were drenched in the most intense rain ever – so we bailed and began the drive home. We got home about 8 and just had a chilled eve and day today. I had to go to a training course / interview for a volunteering opportunity I have in at the moment within national trust houses, and I nearly was too tired to go- but my boyfriend pushed me into going and even stayed at mine for 3 hours to wait for me to get home. 
This post is boring for most of you I know, and I’m sorry! But it means so so much to me to have someone by my side like he is. Someone who will push me to do things in my own best interest even if I moan about it, who will put me first sometime and try to make me happy however he can. Don’t get me wrong, we aren’t perfect – last night we were arguing for hours just over stupid little things. But at the end of the day I love him a stupidly crzy amount, and the fact that he will hold my hand and make me do my injections and hug me after, and is interested in what the doctors say, and cares about how it makes me feel- well, that is invaluable to me.

Try to make sure you have someone in your life who will make you do things you don’t want to do, just because they know that is what you should be doing. They are the best kind of people
Hope you are all well and happy

H x

Hello Humira…and a whole lot of fear :S


Hi all,

So I got my blood results back and they were basically normal – yay. But then on Monday I was feeling really bad, my stomach was sore and sensitive and I felt so sick; not a good day at all. Unfortunately struck at the worse time, what with dissertation panic and all my other university work. I had to retire to bed for the evening and call upon my lovely boyfriend to come down for the night for get-better-soon-snuggles and a quiet night of TV in bed. Luckily it made me feel better by Tuesday, and I just felt a little sorry for myself and sore the rest of the week, and if im honest a little shaken – it was the first time I have actually felt, really, “crohns ill” since my operation, the first time I can definitively say YES. that was crohns. And that my friends, is more than a little scary.

I went ahead with my appointment with my specialist on Friday (god, was it only yesterday?!) but been in denial about blogging the results – infact I refused to fill my mum in on any more than the basic details because I cannot face going over them repeatedly – passed her questions on to dad for answering! In essence, Crohns is most definitely back and unfortunately I am starting to feel its effects, and this means It is probably only going to get worse. Luckily this time round it has been detected and understood  a lot quicker (through the colonoscopy, seeing a specialist and my own understanding and experiences) which means we have time to act quicker before scar tissue forms as it did before. My doctor is AMAZING or at least I think so – and he wants me to not go back to having “duvet days” but to carry on living a daily life which is normal, and as he put it in- not just look at the cost on my body of having this illness, but the cost on my life. Those experiences you miss when you are ill or cannot enjoy – and he wants to stop this happening again, which I agree is a fantastic aim; I am just in denial about needing a step up with my medication.

I currently take 150mg of Aathiaprine a day, and am now commencing the pre-test to begin Humira (spelling?!) which is something I have wanted to avoid. Both Humira and Infliximab with their injections / infusions seems a lot more serious, more scary, more like I am ill. and I have TO INJECT MYSELF. I hate needles and injections enough to begin with – what if I cant do it?! what if it hurts too much? what if I do it wrong? ….what if it doesn’t work and this is just a crash and burn back to being so ill like I was last year. What if nothing I do changes that? I am terrified. and scared. and I know one injection every two weeks is worth it, if it can stop crohns then that is amazing- but what if it cant? what if its back forever and maliciously?

I know that seems over the top, and I needed to get that out but I also need to focus and BE STRONG. be strong! I have so many amazing people in my life that can help me, and for that I am grateful!  For now I need to focs on the blood test, and chest scans etc and get it organised – and RESEARCH RESEARCH RESEARCH. I think it is so important to understand what you are pputting into your body! So…here begins my journey of Humira. I will keep you updated as I go ; heaven knows I wish I could follow someones story who has been through this already – so maybe I can provide that for other people . Fingers crossed

From one very very scared person

H xx

Cold, cold go away, come again…never.


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I am ill. Still. Again. Continuing.

BLEUGH.

I have been ill for at least the last three weeks – before you panic I mean “normal person ill” not Crohns ill *. I have a constant cold, cough, general un-wellness. Not fun!

I also developed these weird lumps down my neck, which were a little worrying – so I went to the doctor who basically said it was because my body cant cope with being ill (no surprise there then) and so my glands weren’t draining fluid and it was kind of bubbling up. I only have two I can feel, but she said she could feel another 5 or so…and now my mouth is hurting so I cant open properly so I think that may be linked to this damn cold as well. She said when you fight it off next week these will drain – try three weeks later, COME ON IMMUNE SYSTEM.

I am sat here typing and eyeing up my hairdryer, with fingers that are turning blue with cold I know I am going to head to the hairdryer, plug it in behind my bedside table and blow dry away the cold! Added to this I also have two big deadlines tomorrow (probably should be blogging today, but some things are more important 😉 ) and then lots more for the start of December – PLUS my dissertation stuff. STRESS MONKEY.

My friends and boyfriend are doing a brilliant job at looking after me, but its not quite the same as lying at home on the sofa with mum doing everything for me, is it now 😉

Oh well onwards and upwards with the health (I am hoping)

Hope you aren’t all suffering in this new bout of cold.

Smile 🙂

H xx

* sometimes its hard to not just dismiss everything as being nothing, my scale is 0=Healthy to 10= Crohns, ambulance operation. Hard to find a middle ground.