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Running on empty.

I’ve been really busy this week, and I think I forget that I can’t just keep going and keep going and nothing will happen. This past week has just been manic for me and it’s actually wrecked me.

I was meant to be going to the hospital for my MR Arthrogram on my shoulder on Monday. Due to my latex allergy they have to have me on the first slot in the afternoon and have the room deep cleaned beforehand. I had rang them when the appointment arrived in the post because I knew that it wasn’t the first slot, so they rebooked it and booked a deep clean. This was about 5 weeks ago. I rang them about a week before the scan to double check they had booked a deep clean and got told that it was definitely booked and sorted. Arrive for my scan, gets to half an hour past my scan time and I’m starting to get a bit miffed. One of the radiologists comes out and brings me round to Interventional Radiology (IR) and tells me on the way that it wasn’t booked for a deep clean but they were trying to get a hold of the team to do it. Of course I decided I was annoyed at this and was quite possibly giving off the angry irish impression. I collared the radiologist who I know quite well cause she puts all the PICC lines in and is quite senior and told her how annoyed I was. I was due in on the Wednesday to have my new PICC line put in so Sharon managed to work it that they did my Arthrogram and PICC line on the Wednesday at the same time. In some ways it was a good thing, but it scared the complete crap out of me. Normally I deal really well with stuff like that, but the arthrogram was a new thing for me. I’d never had one and I didn’t like the idea of a needle in my joint. Cookie has had a few of them now though so she was able to tell me what would happen and I’d seen her having hers done so knew what to expect. Still scary tho. So it all got done on Wednesday. Unfortunately they had to inject quite a bit more dye into my joint than normal because they kept missing the place they wanted to put it in, so all day Wednesday and a good part of Thursday I kept dislocating my shoulder. It wasn’t very pleasant.

So then I went up to Edinburgh on Friday to stay with Dad and Irene for a few days before they go to Cambodia. I needed to make peace with dad because we’d had a big argument about a month ago and we hadn’t really left things on the best note and I don’t like doing that. I had a good weekend but it really did knacker me. I’m used to being able to rest in between busy days and allow my body time to recover but I literally didn’t stop for over a week and it kinda came to a head today when Cookie basically put me on house arrest and informed me I was not going to Salford to see my friend in hospital, that I was going home, having a neb and going to bed. Apparently I looked like a zombie and sounded like Wheezy from Toy Story

Wheezy

As brittle asthmatics, or even for many people suffering from chronic illness, every task or outing we do takes more effort than most people. We have to make sure we plan our day with time to neb. It’s difficult when you want to be a normal 23 year old to allow yourself to stop. It’s something I’ve been struggling with quite a bit lately. I want to be able to keep up with those around me and to be able to do busy weeks like last week and not struggle massively after. I think it’s one of the biggest causes of depression in spoonies. We want to be normal. We look normal enough, and get told often enough that “you don’t look sick”, so why can’t we be normal? Why does everything we do need a military prepared operation to get sorted. Why can’t we just decide we want to go somewhere, jump in the car and go? It takes a lot physically when you’re poorly. It’s constantly hard to breathe, then you’ve got everything that goes along with it. Steroids have caused so many problems on top of asthma for me, and that’s been harder to deal with in a lot of ways than asthma. The whole bilateral hip replacement saga, diabetes, the adrenal insufficency, osteoporosis, diabetic retinopathy and weight gain. Asthma doesn’t just affect your breathing. And that’s what so many people struggle to get their heads around so much. But we want to be normal as much as you see us as normal.  So i’m doing very little for a few days and recovering from all the nuttiness.

I will be able to go to uni in Sept and not end up a mess. Honest.

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First week of a new attitude. Pro’s and Cons.

Well the past week has been pretty good. I’ve had one of my best friends, Kira, over to stay. Originally she was only meant to stay from Monday to Thursday, but only ended up going home last night. It was fantastic to see her. Kira has the same problem in her hip as I do, so she was able to understand the kind of problems I was having, and showed me ways to get around them.  It was good having someone in the flat aswell. I’ve not had anyone about for a long time while cookie’s been in hospital, and I don’t think I realised just how good it is to have someone else around. Even if it’s just to answer you when you talk to yourself, to laugh at you when you do stupid things or to play the DS with you.

So Kira arrived on Monday night. Originally it was going to be about 2130, but they got held up and it was about 2330 by the time they got here. Kira doesn’t exactly travel lightly. Doesn’t really help that she needed to bring her pillows with her, and then all her meds etc. But that Monday was good, I’d managed to tidy and sweep the kitchen floor. I hurt like hell afterwards, but it was a major accomplishment for me. For the past few months, since my hips went to complete shite, I’ve been unable to do things like that. But managing to both clean the kitchen properly, and then sweep the floor, made me feel like I’d managed something on my own. It sounds so stupid that such a small thing could make me feel so good, but it was a good thing for me 🙂

Tuesday was a hard day. I don’t know if I can successfully think of something positive to come out of Tuesday. It was one of my best friends funerals on Tuesday.  I spoke about her in A Proper Diagnosis, but her funeral on Tuesday was a huge test of my emotions. It was the last time I was going to ever be in the same room as her.  Watching her coffin going past me just made me feel as if a huge hole had just formed in my heart. I wasn’t ready to say goodbye to her. She was too young, and was far too nice of a person to suffer the way she did. I miss her hugely already. When cookie gets out of hospital, Kira wants to go to Blackpool and see the illuminations. So hopefully we’ll be able to do that, visit Kat’s grave and say Bye properly to her in our own ways. She was, and still is an inspiration to me. She battled the people who put her down and fought tooth and nail for a proper diagnosis and no matter how ill she was, she always provided a listening ear for me when times were rough. I will always remember her for the person she was before she took severely ill. But her funeral was a celebration of her life. They chose some fantastic songs such as Amazing Grace to open, and the priest gave a beautiful homily about Kat’s life and what she had achieved.  R.I.P My sweet, and breathe easy now. x

Wednesday was spent chilling in bed. I think… I’m having a serious mind blank now as to what’s happened over the past week. I should probably write these things down.  But I think I spent Wednesday in bed watching DVD’s with Kira. She needed a day of rest after Tuesday and I was feeling a bit down. But I learnt something on Wednesday. That asking for help is not a sign of weakness, it’s a sign of strength that you’re not afraid to show you’re not invincible. Especially when it comes to asking for help with things like getting my socks on when I can’t reach my feet cause of my hip. Until recently I thought that asking for help was putting pressure on my friends, pressure that they don’t need.  But then I realised if they were really my friends then they’d not have a problem with helping me out. I said I wanted to change my attitude about things, and I really did mean it. Both online and in real life. And I can do it.

On Thursday I had a blood test to go to at the GP’s surgery. It was my annual diabetic bloods plus some that the hospital had requested. after my admission, just to make sure that a lot of the levels had returned to normal. Karen, one of the practice nurses, is absolutely amazing. She used to be an A&E nurse, and a phleb before that. So she’s well used to getting blood out of difficult veins. But as well as that she is a fantastic listener. She knows a lot of what’s going on at home, and understands why a lot of the time I struggle to keep my moral up. Not only that, but she generally ends up being the person who has to deal with me when I’m splatting in the GPs surgery haha. I think I’ve scared her a few times. But I trust her a hell of a lot to not call an ambulance unless it’s really warranted and wouldn’t do it against my will.  But that all went OK and I then went to the chemist and sorted my script out, got some gas and electric and then tootled home. Then Cookie came round with a support worker for a bit. The SW was a bit of a pain in the arse. A) She sat on my bed when there was a chair sitting right beside it, and I don’t like complete strangers sitting on my bed. B) She followed Cookie around constantly, despite the fact there was always either myself or Kira with her so it wasn’t as if she was going to do anything stupid with us watching. and C) She kept treating me and Kira like complete invalids! I hate that! With a bloody passion!  But we sat and played Monopoly card game for a bit which was good.  Was sad having to say bye to her that afternoon, but that’s the way of things at the minute. But the positive was that she managed to get out, and we did have a laugh playing monopoly.

Friday was a tad manic. Cookie and her mum had to come round to try to find some clothes cookie needed for the show. They didn’t manage to find them in the end, but they hung around for a cup of tea and a biscuit. I managed to try to show Julie that I wasn’t against the plans that were being put in place by the pyschs. I think she was of the opinion that I had sort of been telling Cookie to rebel and not follow the treatment plan, but I want her home. And the easiest and quickest way for that to happen is if she follows the plan and talks to the pyschs. Although her mum carried the conversation on for far too long afterwards, and I could see Cookie getting visibly upset. I think at that point I sort of said that she needed to get back to the ward. Whether or not her mum carried that chat on in the car, I’m not sure, but who knows. Then that evening we went up again, and played a game of monopoly then had a Chinese  Of course I finished mine, but Cookie barely ate any of hers, but Kira managed most of hers which is good. Her tummy had been playing up something silly lately so for her to be able to finish an entire meal was wicked. But when I got home I decided I was going to attempt a shower. Bearing in mind I’ve not been able to have a proper shower in months because I’ve not been able to get in to the bath. (Our shower is above the bath) But Kira had shown me a fantastic way to do it involving a scarf or belt going around the sole of your foot, and sort of slinging it over the side. It was absolutely amazing to have a proper shower, And I honestly think it’s the best shower I’ve ever had. Seriously. So that was the positive of Friday. Having a shower and showing myself I can do it, it’s just finding ways around my hip, which Kira had shown me. Brilliant.

Saturday was fantastic, if not very tiring. Kira’s friend was in Manchester for the day, so we met up with her and went to the Trafford Center. If you’ve never been in the Trafford Center, it’s ridiculously huge. I think we spent about 4 hours there but only went into about 5 shops in the end. But there’s a Legoland there as well, all be it outside and a bit of a hike. We didn’t have time to go to the proper Legoland, but went to the shop. Kira got me an awesome notebook that you can write your name on in Lego, I got some stickers, a pen and pencil set, an orange block key ring with my name engraved in it and got Cookie a personalized minifigure. She’d been able to join us for an hour because her mum was going to Costco and she really didn’t want to wander round there with the family. So Amy (Kira’s friend), Kira, Me and Cookie wandered round the Lego shop then back to the main center. We went into HMV, but it was getting quite late in the day and Kira had wanted to go to Next and get jeans, but I didn’t wanna have to drag cookie to the opposite end of the center for her to have to walk to the other end again when she was getting picked up, so we hung around HMV until her mum was picking her up, then she headed off to her mum and I headed in the general direction of Next, calling in at Claire’s Accessories and the model shop on my way. I don’t have any of my modelling tools or paints here at the minute, they’re all in Loughborough at Bobby’s (I really should go down and get them actually) so didn’t buy any models, but I bought a new purse in Claire’s because mine is falling apart and I’ve had it since I was 12. It’s quite a cool pink one with a monkey on the front. So I met up with Kira and Amy and we headed back towards the shopmobility place. I’d hired out a mobility scooter because I wouldn’t have been able to walk around the TC on my crutches with the way my hip is being at the minute. It wasn’t so embarrassing because both Kira and Amy were in wheelchairs so I didn’t feel like the odd one out. When I got home I took some pictures of Amy and Kira. Since Kat died and I realised I didn’t actually have any pics of me and her together, I’ve been all for people taking pics of them and friends.  Amy had to go and collect her dad from a St John duty then, and me and Kira jumped into bed. We were absolutely knackered, but it was really worth it to be able to spend some time doing normal things. There was loads of positives for that day, but I think just getting out and doing normal stuff with friends, and being able to not feel embarrassed by using a mobility scooter, just made things so much easier. It really gave me a moral boost.

Sunday was a lazy day. Kira wasn’t feeling very well, so we spent the day in bed sleeping and watching DVD’s. Can’t say I did an awful lot that day to say I did something positive. But I think overall the week was pretty positive. Just having someone to stay was great. It gave me a morale boost at just the right time. So thank you Kira 🙂

Will try to keep this up! Don’t know how well it will last, but I can try! x