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Comparisons

Two blogs in two days, blimey.

I’ve been thinking a lot today about how my health and treatment compares to friends. I think one of the things I need to work on is not comparing my health and treatments to others.

I’m fortunate in that I have a fantastic GP, chest consultant and support network. While it’s going to take a long time to be seen by psychology, I’ve got a fantastic GP who wouldn’t hesitate to contact my psychiatrist in an instant if he was worried about me. I spent a year having my head managed by my GP and he was able to start so much and sort so many things out for me that most GPs wouldn’t be willing to do. And I still moan. And I still get upset when other people get better treatment than me. And it’s making me so fucking angry with myself because I know that I do it, and I know that it upsets my friends. The fact that I can walk into a GP appointment and straight away they’ll increase my anti-psychotics, or will offer me any support they can is quite amazing. And I don’t think I realise just how lucky I am. Manchester may have the worst mental health care in the country, but once I was in the system, they’ve been mostly helpful with my care.  My GP has gone above and beyond for me, and he’s the only reason I haven’t left my current GP practice as the other GPs and receptionists are all arseholes. But Dr N has been amazing and I couldn’t ask for a more understanding, caring GP.

I have a chest consultant who has written me a fantastic letter for A&E, given me a PICC line pretty much constantly for about 3 years now and I still moan when I have to have a cannula, or don’t get a Port-a-Cath. Yet my best friend has to almost prove how poorly she is to get IV Aminophylline when she’s poorly and has had times in A&E where it’s taken ~20 attempts to get a cannula, and then they gave up and put a central line in. Whereas I got a PICC line the minute access started becoming a minute issue. It’s beyond the levels of fair. I had a new PICC line put in today, and ended up breaking down in tears in the Interventional Radiology theatres because it was so unfair that I was getting a PICC and Spud doesn’t. Despite being under the care of the same consultant. Don’t get me wrong, things can be shit, but when they’re shit I generally get sorted fairly quickly and don’t have to fight people for care as far as my physical health is concerned. I feel like a pretty shitty human to be honest. I know it’s not my fault where I live, but I feel like I could handle it so much better. I almost feel as if I gloat to my friends and rub it in their faces that I get the care they so badly want. I don’t intend for it to come across like that, in fact the fact that i’ve realised I do it has made me angry in ways I can’t even explain.

I want everyone to get the same treatment. We all get treatment under the NHS, so why the fuck does your postcode dictate how good your treatment is? It’s bloody ridiculous and it makes me angry and frustrated.

<Rant Over>

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Making tough choices.

The past few weeks have been totally manic for me. Between myself ending up in hospital, Cookie going to Spain and my head going to pot, losing one of my best friends, having to cremate said friend, making the decision to resit first year and making the choice to bring Sophie back to Ireland with me.

At the end of August I was meant to sit my end of year exams at uni. Because of my mental health, my GP, Cookie, Sophie and I had made the decision to defer my May exams to give me the best chance of getting my head into the best place as possible. Unfortunately, I ended up in hospital during the first week of the exams. I managed to make the first one, which was Cell Biology but wasn’t well enough mentally or physically to sit the rest. This left me in a bit of pickle in that I wouldn’t be able to proceed into second year because I didn’t get enough credits. So I attended quite a bit meeting in uni last week with my tutor, lab module co-ordinator and student welfare officer. We have decided that I’m going to redo 1st year as a clean slate and not have to sit the modules I passed, which were Study Skills and (shock horror) Cell Biology. I was totally gobsmacked to see I’d passed CB! It’s my worst subject!

Making the decision to resit 1st year and not just go “fuck it, I’ve had enough” was not easy. Every part of me at that time was not believing I was in anyway smart enough to be doing this course or well enough to be able to keep up. I just wanted to be able to do it in 3 years like everyone else. I know not everyone else didn’t have the crap going on that I did, but still. There’s so much I need to be able to do to keep up, and I’m scared I’m not going to be able to again. And then it’s essentially 2 years of my life and about 15 grand wasted. But I enjoy uni. I love having a reason to get out of bed and do something, I love learning new things and I’m excited to see what the future will hold for me. So I’m going to give it another go. Hopefully now we  know my head is doing a lot better(touch wood), I’ve had my shoulder surgery and hopefully my chest consultant will pull his finger out, things will be a bit easier this year. But I have another reason to work hard, and I’ll explain that in a minute.

I’ve had some rotten luck with the DWP lately. I got back from Leeds and the meeting at uni on Wednesday last week to a letter from the council telling me my housing benefit had been stopped. At this point I totally panicked and rang the council. They told me it had been stopped because it was up for renewal. I’d heard nothing about this and had no letter about it or anything, so needless to say I was a total mess.  At this point I rang the DWP to find out what was going on. They said that they hadn’t actually been cancelled or up for renewal, but in fact they were only suspended because I hadn’t sent in proof of my student finance for this year. I hadn’t a clue I needed to and was surprised when they mentioned it. The woman on the phone told me that they should’ve sent a letter out but didn’t for some reason and the only thing they could do was fit me in at the job centre in person to get the relevant documents sent into them quicker than it would be by post. Thankfully it was pretty much sorted by that afternoon, and hopefully things are semi sorted. Unfortunately due to a change in my student finance rate, my ESA rate has dropped considerably which is causing me a great deal of worry at the minute. I’ve been struggling to manage as it is. I’m debating cancelling a few things that aren’t totally necessary and seeing how much I can knock off monthly bills.  It was just a really shitty week.

I’ve spent a lot of time in Leeds lately. Sophie ended up quite poorly in her local and unfortunately her mum was in the Scottish Highlands and couldn’t get home, so I said I’d hang around to make sure she was OK and not on her own. I ended up with a sore arse from sitting in hospital chairs for so long! But we picked her up from hospital when she was discharged and the difference I saw from when I left her in the evenings during the week was astounding and was good to see. It was absolutely gutting and soul destroying to see her in so much pain and not being able to help or do anything. She really is an amazing human and I wish she understood that. But knowing that she wasn’t on her own has helped us both deal with it a bit. It was a very difficult admission for her, both mentally and physically, and being able to be there to hold her hand and show her the difference that she makes to me when she does the same was rewarding.

The reason I had to leave Leeds was that I had to go to the funeral of one of my best friends. Simi passed at the beginning of August, but due to circumstances we were only able to say goodbye properly last Thursday. It was heartbreaking. I was in no way ready to say goodbye. Simi was doing the same course as me, all be it at a different uni. But it brought us so much closer together and we spent many a night moaning about uni politics, lecturers and the stress of assignments and exams. She would’ve known exactly what to say when I made the decision to resit the year. She always just knew the right thing to say and I can’t see how it’s ever going to not hurt. To not be heartbreaking when I see a picture of us both or to make me cry when I think of good memories. I’m just glad she was able to fill the last few months of her life with things she enjoyed. And that brings some comfort to us all.

I’m going to be going to Ireland on Wednesday for the first time since January. I absolutely cannot wait. I’ve not been home since January because of many circumstances. I’m taking Sophie home with me for the first time ever. I’m totally beside myself with excitement. I’m counting down the days. It’s logistically a nightmare, but the idea of giving Sophie a break for a few days and seeing where I grew up is fantastic. It’s coinciding with my birthday as well so I’m hoping we can all go out for a few drinks. It was tough making the choice to ask Sophie, as she has a lot of medical problems that could stop her flying and is taking a lot of phone calls and toing and froing to try and get it sorted. But I made the choice to ask her if she wanted to and left the ball in her court. And she made the choice to come over! And I’m glad she did! I’ve already started writing my packing list and tidying my room so I’m not having to come back to a bombsite!

 

So anyway, it’s nearly 4am and I’m not asleep.

 

Until next time people x

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What is OK?

What is OK? I think everyone has different definitions of what OK is for them, or for what they think OK should be.

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Above is what Google reckons OK means. But I think everyone has their own definition. I think for me, OK is being able to live my life without having to rely on extra medications and being able to do the stuff every day that I want to. Like going into uni everyday, not being scared of going out and not having panic attacks at the idea of doing simple things.  That for me would be epic. At the minute I can’t say I’m OK. I’m needing a lot of medication on top of my regular stuff to get through the day. Things like extra promazine, diazepam, sleeping tablets and then strong doses of antidepressants and antipsychotics. It’s hard. I was in hospital with an asthma attack over the past week, and while I was in there was a prescribing error and I went about 4 days without any of my anti-anxiety or psychotic medications. I spent a lot of the 3rd and 4th night sitting shaking and fidgeting so much I thought I was going to vibrate off my bed. I ended up making my chest worse because I was so restless I ended up wandering around the hospital for about half an hour trying to get rid of some of the excess energy.

But there’s other kinds of not OK. There’s physically not OK. I spent so long dealing with physical not OK, that when emotional not OK happened, I didn’t know how to deal with it. It took those around me to recognise it and tell me I wasn’t OK. I wanted to deal with it in my own way and that was to ignore the blatantly obvious. I spent so much time worrying about other people that I missed things getting worse with me. And I’ve learnt from it. What have I learnt from it?

I’ve learnt it’s OK to not be OK. It took a long time for me to be able to say that. It’s the beginning of July now, and I only started to be able to say that in, maybe May? I wanted for so long to be able to deal with everything and not need to ask for help. But it didn’t make any difference because everyone around me knew there was something not right and I realised that. It took me a long time but I knew that by admitting I wasn’t OK that I could get help faster which would mean getting better quicker. By saying “I’m not OK” I’ve been able to get to the point that when I say that I am OK, people actually believe it. It also means that I’m able to help tell people what’s making me not OK as much. Or other people are helping me figure out how I’m not OK. I’m still not OK in the grand sense of the term. I might have OK days, where things go right and I feel better, but overall I know I’m not OK. But that’s OK. Because I’ve got people looking out for me to make me be OK. Which if I had’ve kept saying I was OK, I wouldn’t have. It’s taking time. And I hate that. I’m not a patient person and I don’t want to wait around for something to happen. Hopefully with a combination of the right medications and therapy (which is ongoing, but I’m not convinced I’m getting the right kind with the feck wit I’m seeing) will get me to a point where I can say I’m OK more than saying I’m not OK.

Just remember that it’s OK to not be OK.

 

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Dear best friend

Dear Spud,

 

As you’re lying beside me snoring and making dodgy sleepy noises (I just poked you to check you are breathing by the way), It reminds me how lucky I am to have you.  It’s not easy being friends with me. I have a lot of baggage. But when you have as much going on in your life and you’re doing as much as you do for me is one of those things that is just amazing.

On the 11th March last year you posted on a support group we both use saying you had been transferred to my local hospital and I asked if you wanted a visitor.  You’d been quite poorly yourself and were quite far from home. I remember bringing you smoothies and juice, a colouring book and markers and a small cuddly frog (there may have been other things, but I can only remember those and you turning down a bacon sarnie on the basis you’re a rabbit). It was the beginnings of a friendship that I hope I’ll never lose. I didn’t expect to speak to you again for a bit when you were discharged because you’d been really poorly. Although I was worried about you, I thought you needed some space. But you messaged me when I posted a message on Facebook saying I was having a rubbish day and felt poop, both mentally and physically. This was only about 3 days after you had been discharged, so as much as I was pleased you’d messaged me, I was totally surprised. But it was yet another reason why I think you’re fantastic. You spent ages talking to me that night and I was able to go to bed and not have a total meltdown over something, that looking back, probably wasn’t actually that big a deal. But a year down the line, I’ve totally lost count of the amount of times you’ve done the same, sometimes even staying up until silly o’clock with me.

I remember getting the train to come see you about 3 weeks later and we spent hours just sitting talking and putting the world to rights. We both talked about stuff that I’d never even spoken to my lifelong friends about. But I trusted you as if I’d always known you. I think because we’ve both been through so much and have similar health problems, we just got each other. You understood what goes through my head when I get frustrated about the restrictions my asthma and joints place on my life. Very few people truly understand that, and it was so good to finally have someone that I didn’t need to try and explain myself to when I didn’t have the energy to do something that most people would expect me to be able to do without hesitation. And you knew about “The Spoon Theory”. Bonus. I know there’s other people around me to talk to. And I feel truly grateful to have them. But I don’t know. You just understand so much more. You understand the fear of ABG stabs in A&E. The fear of cannulas in certain places and the fact that sometimes I just want to stay in bed and not move because I just don’t have the energy.

In January this year, my mental health crashed in a big way. I overdid it with revision for uni, staying up until 2/3/4am and getting up about 8am again for about a week, it was my stepdad’s 2nd anniversary and things were going downhill with my chest, fast. This triggered a breakdown for me, and you were the first person who picked up on it and acted on it. You helped talk me down when I was psychotic, and drove over and dragged me to the GP about it when my exams finished. I don’t think I’d have had the guts to go on my own, and although my flatmate would’ve taken me eventually, I didn’t tell her how bad things had gotten and I don’t think she’d have gotten the message across in the same way. But you started the ball rolling in getting me the proper help I needed. You stayed with me for about 2 weeks in total, and every night when I was having a nightmare, you’d wake me up, help me calm down and then get back to sleep again. When I was absolutely terrified of something most people would consider stupid, you didn’t patronise me or make me feel small for it. You took me back to the GP again and again until they finally started doing something. I went through a phase where I seriously struggled to take any of my medication, which when you have multiple medical problems, isn’t really a sustainable scenario. You helped me get to a point where I was able to take most of them, and when I went into hospital with my chest, you made sure they knew I was struggling.

When I had surgery last month, you came to stay. You got up at 7am to be at the hospital with me before they brought me down to theatres because you knew how scared I was. You demanded they let you into recovery afterwards despite the fact they don’t normally allow it. When the anaesthetist changed everything they had promised me the night before the operation, I was 90% close to telling them they weren’t doing the operation, signing out and going home. I was scared beyond belief. But between you and Nugget, you got me to a place that I was able to get some sleep and wasn’t completely terrified. I’d let them operate. You made sure that the staff knew I was scared and have done so many times beforehand.

Things have been pretty rubbish in my life lately, but things haven’t exactly been easy for you either. You’ve had a lot to deal with in terms of your own physical and mental health, and have juggled a job, lots of health problems and coming over to see me at least once every 2 weeks since January. Most people wouldn’t have done the amount you have for me, purely because you have so much in your own life to deal with. But you stuck by me. And as much as I’ve told you it over and over again, I don’t think you truly understand just how much this means to me. Life’s difficult when you have a chronic illness. Looking after yourself takes up so much energy, but when you add in looking after other people, it increases the energy need tenfold. But you do it and don’t moan about it or make me feel bad for asking.

I feel safe with you around. Things aren’t as scary and I know that when I have a nightmare, panic attack or become psychotic, you will help as much as you can and if you can’t help at the time, will make sure Nugget knows I’m struggling. I know lately you’ve had to make some pretty tough decisions for me and I know you think I hate you for making those decisions, but things couldn’t be further from the truth. I’ve been the person having to make tough decisions that you’re not sure are the right ones, but I promise you from the bottom of my heart, I’m not angry and I’m not bitter. And I will never, ever hate you for making those decisions. If anything, I’m thankful that you made them. Because as much as it might anger me in the short term, in the long term I know it’s the right thing.

So thank you. Thank you for sitting with me in A&E. Thank you for making me be sensible when I want to sleep and should be taking steroids and drinking Lucozade (and stabbing me with hydro when I throw a strop and don’t take my steroids). Thank you for staying up until 2am and talking me through a psychotic episode. Thank you for being able to explain things to my GP when I can’t. But most of all, thank you for being someone I can call my best friend, who I can pour my heart out to and will never, ever judge me.

Love you Spud.

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Wearing a mask.

Trigger Warning – Depression, PTSD, Suicide, Self Harm, Hallucinations, Abuse.

So there has been a lot of talk this week in the news about the lack of support available to people suffering from mental health issues in the UK. They reckon that 3 out of 4 people with mental health issues receive no support whatsoever. Whether that’s because they haven’t been diagnosed, haven’t spoken up about how they’re feeling, or the lack of support available to them once they’ve been diagnosed due to funding or lack of services, it’s happening.

I’ve had depression of some description since I was 13. I’ve got diagnosed PTSD, severe depression and they’re querying some kind of psychosis at the minute. A lot of this stems from issues I’ve grown up with. Be it my stepdads drinking and subsequent emotional and physical abuse, seeing my grandad dying of Motor Neurone Disease or things that have happened during both my mum and dads other relationships as I grew up.  More lately I have lived with someone who suffers from similar issues, but has had to deal with a lot more severe symptoms than me for much longer than me. She was sectioned for 7 months in 2012-2013. I still believe to this day she was sectioned because they didn’t listen to my calls for help when I told them how much she was struggling. I spent 2 years telling them her mental health was getting worse and worse, and wasn’t taken seriously. I remember taking her to see her GP in February 2009 about her worsening mental health and it wasn’t until she took a massive overdose and ended up in Intensive Care nearly dead at the end of 2012 that they stood up and listened, and even then the care she received while an inpatient was absolutely diabolical. She spent 7 months on several different inpatient psychiatric wards being offered absolutely no counselling or therapy whatsoever. When it got too much on the ward and they ended up hysteric, the solution was to sedate them with injections and medication. She was discharged in April 2013, and it took them until September 2015 to offer her some kind of psychotherapy. Not really something that I’d consider acceptable for someone who made a substantial attempt on her life.

This past month has seen a severe decline in my own mental health. Since New Year I’ve struggled to make it out of my flat, have made it to one lecture at uni and have had to start taking regular diazepam, sleeping tablets and have my anti depressants increased with the possibility of adding in an anti psychotic. I’ve been struggling to take my regular medication for my various other conditions, believing they either aren’t helping or using it as a way to self harm. My nightmares have gotten substantially worse and I’m waking up most nights screaming. Today is one of the few days I’m actually able to sit here and rationally explain what’s going on. Unfortunately it comes as I’m in hospital. I was due to be admitted on Monday 15th for my regular elective admission for aminophylline. My GP has been seeing me twice weekly for about a month now, and knew the state my head was in. He rang ahead to ensure the ward was aware of the difficulties I’m having and to try and ensure I would be seen by the on call psychiatry team with the aim of starting some more medication, asked them to make sure I was taking my regular medications, including my steroids and not skipping painkillers just because it’s a good way of causing pain. When I got to the ward, none of this had been done, and none of the staff were aware of the difficulties I’m facing. My friend S, my flatmate and my mum all told them they needed to watch me take my medications as I had been going several days at a time without taking any, which meant I have had about 4 major adrenal crisis’ in 2 weeks.  I was requiring a side room as I’ve tested positive for MRSA so was hoping that my nightmares wouldn’t be too much of an issue for the others on the ward. However it turned out the ward I was admitted to wasn’t my normal respiratory ward, and was in fact the ward that Cookie had been sent to when she was discharged from ICU after the overdose and spent several weeks on. That ward has a lot of bad memories for me and I was struggling in a massive way to deal with my PTSD while there. My first night brought yet another nightmare, and one of the agency staff on the ward shouted at me for shouting and waking the other patients up. It has really mucked my head up and it’s left me even more scared to go to sleep at nighttime than I had already been.  I’m struggling to keep myself going, and I can’t keep taking regular diazepam and sleeping tablets until a proper referral to psych comes through. As it is I’m going to be in hospital longer than I anticipated cause they’ve found I’ve pneumonia which made me fairly poorly, so I’m looking at over the weekend or Monday. I’m not going to lie, I’m struggling. I was seen by RAID which is the sort of on call psych team in the hospital. They were pretty useless and told me to cheer up. Really helpful.

One of the reasons I’m finding things so difficult is that I witnessed something a bit horrific in resus (area of A&E where they bring poorly people who need close monitoring and fast treatment) last time I was there. They brought a 14 year old in, and he was the spitting image of TJ. They were doing CPR on him. He had fallen down the stairs and had a brain bleed. They told his family that they didn’t think he was going to wake up, and were discussing organ donation with his family. It broke my heart and one of my more common nightmares is that it’s TJ on that trolley having CPR performed. I know he’s safe back home, I know he’s OK. But I can’t get my head to understand that, and it’s going to be mega difficult to make my head understand that sub consciously. There’s so many different factors adding into my brain fuck at the minute and it’s not going to be easy to get on top of it. I’m not convinced it’s possible to be honest. So many people have told the powers at be that I’m struggling and they just don’t care. My GP has been epic but he’s banging his head off a brick wall. I’m lucky I have some truly amazing friends who are fighting my corner, even if I don’t want to or can’t.

This is where the findings that have come to light this week have angered me. I asked for help for both myself, and my flatmate. I spent hours fighting for her. I begged them to give her proper help so many times and got ignored. It took her to overdose and end up having a seizure and being admitted to intensive care for them to stand up and pay attention. I’ve been telling them since before Christmas that my head has been getting worse. It’s now at the point where I’m pretty much constantly suicidal and have made so many different plans that my flatmate, GP and S have decided that I can’t be trusted with my own medication anymore and have confiscated my medication trays and morphine. People ask for help. People ask for the support. There just isn’t the support there to give it to them. And GPs hands are tied. They want to help. They see the struggle that we are going through and yet there’s still nothing they can do to help because even when they do ask, they get ignored. So what do you do? Not everyone is lucky enough to have friends like mine. Who drop everything and run when the shit hits the fan. As a result of all of this, uni is suffering. I’ve not been to a lab since before Christmas and my lecturers are starting to get panicked and worried. I want to be able to keep up with uni. I want to be able to go to lectures and labs. I really bloody enjoy it. I did well in the exams I sat, I got over 70% on them both. Which considering I had about a week to revise the entire semesters worth of work. That’s one thing that is keeping me going.

So many people see me smiling and happy. See me joking and cheery. They don’t see what goes on at night. When I wake up screaming. When I’m convinced someone’s sitting on the end of my bed with a knife or telling me to self harm because it will make them go away. It’s a mask. And it’s not one I like having to wear.

Mental health isn’t something that can be ignored. It won’t just go away. It won’t just disappear if we “cheer up” a bit. But something I’m finding helpful is saying “No, I’m not OK” when people ask if I’m OK. I’m accepting things aren’t OK and accepting the help my friends are offering. I’m offloading on more than one person and am trying to make sure that I keep myself reasonably safe. It isn’t always possible, but by making sure my flatmate knows when I’m having massive self harm thoughts, it means she can keep my company until I go to sleep and knows if something does happen and can help me deal with it.

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Keep on keeping on.

So the past few weeks since I found out about my shoulder have been pretty manic.

Digesting the news that I needed more surgery has been tough. Last year when I had my hips done I thought it was the last time I was going to need surgery for a long time and it just seems like when things start going right for me, something always comes up. It’s a shit one. But there’s nothing really that I can do about it except suck it up and get on with it. Yea, I’m not going to lie. I’m scared of the surgery. I met the anaesthetist on Tuesday and went through my options and whatnot and it seems like the only option is for me to have a general anaesthetic. My chest consultant has said so long as I’m admitted beforehand for IV’s and am sent to ICU after he’s happy enough for it to go ahead. Still scary though.

Ended up back in hospital spiking temperatures and feeling shite about 2 weeks after my last admission. They suspected I had a massive infection in my PICC line and had me on IV Domestos for a week. IV Domestos is evvvvillll! It makes you feel like poop in general but I throw up rather spectacularly on it.  But a week after being discharged I’m still feeling rather poop and am throwing temps a lot. It’s annoying me. I’m spending all day in bed trying not to fall asleep. Stupid body.

We did get to go to Aerial Extreme last week though. It was a year since I had my left hip done and I wanted to do something big to mark it. Unfortunately being a day out of hospital with ?sepsis wasn’t the best time to go and do it, but we’d already paid for it so I wasn’t going to lose £78 for it. I made it round the little course fine, but about half way through the big one my heartrate hit 190 and I got really dizzy and had to stop. It was the height of shit (bad pun alert). I was so angry that I had to stop when I’d been looking forward to it for ages. Hearts are totally overrated.

Things in other ways are going well though. I’ve had my application for DSA approved and am just waiting on an assessment for it now. And I’ve just checked my emails to find my acceptance letter from university. I squealed so loudly I set the noise trigger on the CCTV off haha. I’ve got my reading list aswell so I’ve been ordering some of my uni books and trying to revise stuff. I’ve not been in any form of education since 2011 and it’s scaring the crap out of me. I have enough problems trying to keep up with things without not having any idea how I’m going to keep up. I’m a hard worker though, hopefully it’ll work out though. Cookie’s sitting her driving test next week for the 4th time. I think she’ll pass it. The times she’s failed has been something totally stupid that had it have been a different examiner she’d probably have passed.

I’ve got a manic August planned. Dad comes home from Cambodia at the end of the month then I’m going to Edinburgh for a week to stay with him and Irene. It’s Irene and Sean’s birthday about a week after I go up so I’m gonna take them out for food when I’m up and do early presents. Then I’m back in Manchester for about a week then Cookie and I are heading to Ireland for a week. I can’t wait! We’re going to see my family but my best friend Michelle is home from Spain in August so I’m gonna see her. I’ve not seen her in absolutely ages and I can’t wait! Plus it’s Chris’ birthday when I’m home so we’re going to go up to Belfast and stay in a youth hostel overnight so we can see him properly. I’m so excited!!!

Bring on August.

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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.