10.7.17

Losing it all...


I can imagine from the title there may be a few people wondering exactly what it is I'm going to be writing about it sounds a bit ominous, well it's my hair. Now I can hear the groans of those of you who know me and those who have followed me for 5 years "Not again Stacie!" Well I am sorry but you are just going to have to read another rant about my hair and all the things chronic rejection has done to it. 

Illness strips you of absolutely everything. It chips away at you, sometimes really, really slowly so you barely notice it's happening and that's what I would say my experience with illness was my entire life before transplant because it was all I knew and I got more ill slow over time. It wasn't until we hit the last few years that illness demonstrated to me what it really could do, what it could really take away from you. 

I got to a point where it had taken my ability to sleep away from me, to breathe unaided was stolen from me, 6am and 6pm no longer my own dedicated solely to life saving drugs that could be done at this time and this time alone. Walking any further than a few feet virtually impossible, unable to work or participate in society in that way, pulling you away from your friends and the people you love. Unable to go on holidays, day trips, to travel anywhere without it being this crazy ridiculous mission. Illness takes away everything from you and it might not be all at once but it does and it eventually has everything of you. 

You have to try and have little things for yourself and one of my little things has always been my hair. It might seem utterly ridiculous but I loved my hair I managed to keep it so nice through those 24 years of living, no matter how ill I was my hair was the one thing you can guarantee I looked after. Admittedly it wasn't that difficult because I do have good hair generally it runs in the genes but I was happy that I had kept this one thing for me, I could disguise how ill I was with a bit of make-up and good hair no-one need ever know that I was the ill girl. 

Transplant occurred.... I was warned that there would be thinning and some would fall out... I was okay with that, my hairs thick, long, in good condition I can afford some damage and some loss. I got all of that and it was fine it didn't make a tonne of difference to my hair that anyone other than me could notice and that was okay and it was starting to get a bit better by January 2016 but then I started to get poorly again around April time. Steroids, steroids and more steroids.... drugs, drugs, drugs then the diagnosis of chronic rejection. All the drugs and everything we have had to do to treat the chronic rejection has just utterly destroyed my hair totally. 

It's the one thing that has really upset me through this whole experience and it seems silly but when you have everything else stripped from you;- breathing, walking, sometimes talking, sleeping properly, eating, bathing, doing anything alone, holding hands with your boyfriend on a walk. everything you can think of gets taken away so you cling to anything you can and my hair was one of those things! 

So Plan "MULTI-VITIMIN" is officially underway, I am going to get my hair back to some sort normalcy :-) It WILL happen, I'm so determined you don't even realise. Why Multivitamin you ask? Well I took them pre-transplant and they really helped! Also currently I don't eat enough that i can honesty say I'm getting enough vitamins anyway so what can it hurt hey? We will see though guys and hopefully in a few months (If I'm still here) my hair will be showing some benefits :-D

As always, thank-you for reading and chat soon
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3.7.17

Pain...


Pain. How good are you at dealing with pain? I'll leave it to you to decide what I mean by pain, for me when I say pain I mean that of the physical kind. If you're a long time reader of mine or you just know me you will remember that one of my significant worries pre transplant was what kind of pain I was going to have to go through when everything was done. Having been a chronic pain sufferer I knew exactly what pain felt like and I certainly knew there was a limit and only so much pain a person could take, so the idea of waking up from all that and being in more pain than I had already been experiencing scared me a hell of a lot. However I woke up and it was all gone if you remember? I simply had no pain anymore it was just gone and it had nothing to do with pain meds as I had them stopped I simply hit the pain removal jackpot and it felt amazing! As a rule when I had Pulmonary Hypertension I made sure I had as little pain medication as I could suffer with, this wasn't me being some sort of a masochist this was me making sure my body wasn't too used to having a drug and needing more and more to satisfy it's need, I was going to need as much as I could post transplant and I was going to need it to be affective, obviously in the end that plan was a bit in vein but at least had I actually been in severe pain my preparation would have set me in good stead for after. 

Chronic Rejection has been a whole different kind of ball game for me. It has so far been very painful. I don't remember not being in pain since maybe July of last year. I'm stubborn though in the beginning I stuck it out with just paracetamol, saying this paracetamol was more affective on me than the average person because I was just so used to not taking anything for pain but when the pleurisy started and I was crying from the actual agony I was in, even I know that's probably the time when you say "Maybe I should be on something a little stronger..." Now I had never actually taken Codeine before so when they gave these two little pills, which look like they could barely help my cat, I wasn't expecting too much but boy did they wipe me out. I was sat in the consultation room at my clinic appointment with my doctor, parents and boyfriend and to this day I still could not tell you what was said or discussed in that room I was so doped up. Sadly Codeine doesn't still have that same affect on me but it still does it's job nicely and makes me nice and sleepy. Ideally for me I would have loved for it to have been there that my need for pain medication stopped but unfortunately it hasn't been, pain seems to be an ever increasing part of this condition and one you simply have to adjust to.  

Now I am also on Oramorph a form of morphine. I've always had bad associations with morphine and I'm unsure as to why but I've just never wanted to be on it for some reason I very much associate it with death and I suppose that scares me in a way or maybe I'm just scared I'm going to accidentally overdose myself, it's not like I haven't before haha! (Hands up, who remembers the Epoprostenal incident?) I'm on it though and it is the most affective thing for my pain at the moment although I still insist on trying to restrict the amount that I use it. The pain is something you race against and one I've learnt I need stay ahead of especially if I want to live a semi normal life where I continue to get out and about. There have been mornings where I have woken up and thought "Oh... Actually I don't feel too bad this morning, dare I say my chest actually feels alright?" I then end up leaving the pain meds thinking I might be able to get away with it when ultimately the inevitable arrives... the searing pain. I should have just taken the drugs! Now it's a game of catch up you spend the rest of the day in some form of pain because you were stupid enough to believe that your body might actually like you for once and provide you with some relief. The Body lies people... even your own!

I can deal with pain, I've been through a lot of pain I spent the majority of the past 6/7 years in chronic pain my little jaunt into wellness for those 9-12 months was just a break and I'm not sure it wasn't a bad thing for my pain tolerance if I'm honest. I was definitely a baby when it came to experiencing some forms of pain initially post transplant, my first "time of the month" post transplant was actually horrendous (something I've never had any issues with) it felt like I was being gutted! Me being a woman who referred to women who complained about that type of thing as being whimps or baby's because I just never experienced any pain with it they clearly wanted attention or were making a bigger issue of it than what it really was, well apparently the severe pain I had been in for years was providing the perfect cover for that pain. Now I was no longer in that pain it gave way for me to experience new pains or pains I should have been feeling long ago. So mass apologies to my fellow womankind for having thought you were all exaggerating a little all this time. 

I feel like I'm coping well enough with this pain so far and as long as I can keep on top of it I believe I can continue to cope for as long as I need to, I do however worry if it gets worse. I don't want to be one of those people who is just "out" of it all the time I still want to be "with" it, to be able to engage with people and do things, the only point I imagine I will be completely out of it will be when I'm in a hospital bed or at least I really hope that's the point lol. 

The past two weeks have been horrible when it comes to pain but it does finally seem and feel like we may have caught up with it I don't feel like we're chasing it so much now we're taking a nice stroll with it where I occasionally have to reign it in.

As always, thank-you for reading and chat soon
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30.6.17

Confessions...


Howdy people. I'm currently sat in bed watching 'Riverdale' on my iPad whilst getting over my morning pain/sickness fest. I can't quite describe to you what my mornings are like nowadays and whether people will really understand how difficult they can be for me and certainly difficult for those that have to deal with me as there really is nothing anyone can do to help me with it at all in the morning. It's a strange set of affairs because I wake up and feel pretty good;- chest feels pretty clear, breathing is even and level, I've got a generally happy demeanour going on. I tend to take pain meds immediately because if I don't this generally "good" feeling will only last so long and that is when we slowly progress through the morning with a routine of breakfast, tea, medications, nebuliser, inhaler, more meds, physio and so forth. Now since my last clinic they altered things round a little and it buggered up my body a little bit so at the moment I'm suffering with a lot of pain which during the morning will be building up and up and up whilst I have to do things. As I obviously have to use my lungs more this then just makes me the most tired person on the planet with an entire chest and torso screaming at me that they hate me, trust me I hate them just as much in those times. 

I do have to apologise though my being 'ill' doesn't really have too much to do with why I haven't blogged as much recently and it's certainly not through lack of content as in my mind I have SO much to write about and genuinely when I have a thought about something I'll alway be like "Oh, I should really blog about that..." then the thought or having to go upstairs to use my iMac hits and there is no way I'm going to move to sit at a uncomfortable desk and I'd rather not have to ask Mark to use his Macbook when I'm at his. It was a dilemma that I hadn't really noticed until I really wanted to get it sorted and organised again and get back into writing things down more extensively again and now that means I own a MacBook! I can easily blog when I'm in the mood now as i's more accessible I can do it in bed when I'm feeling crap and it just makes my life so much easier :-). I know I could use my Phone or an iPad but the way the formatting seems to work between devices is weird and changes and I have zero patience or tolerance for technology lol. 

I have been having a really awful few weeks, if you follow me on any of my stuff like, Instagram or Twitter or Facebook you'll be following the pretty happy version of me at the moment what I definitely haven't been putting on there is how exhausted I am, how much pain I'm in, my constant production of phlegm, my thinning hair, my stupidly round face, my red face, the fact my head could probably be used as a tap and my latest body hang-up apparently my new title can be "Stacie: The big flake of Skin" my skin is that dry all the time! It's amazing the side affects that drugs seem to produce in a person and the thing is half of the drugs are drugs combating the side affects of other drugs which in turn have side affects, so essentially most of the time you're having to choose which your lesser of evils is or you just have to put up with it.   

I'm really not complaining though because I'm still managing to do amazing things within my limited means and we're still planning things so I feel like life is good I just wish my mornings were't dragged down by being ill, I want to be able to hit the day running, figuratively anyway, get out and seize the day without being dragged down with feeling sick or by experiencing excruciating pain. I suppose the reason I've titled this blog 'confessions' is because a lot of the time I come across people in my life and they generally know the situation what's going on with me but they've never met a dying person before, they aren't sure what to expect so I generally give them the best they'll probably get when it comes to that type of person. I stick my smile on my face and I pretend that I'm not feeling like rubbish and enter the world where I'm not ill and I'm just me. Firstly it's nice to pretend for me sometimes that I'm not the dying girl and it's nice to make light of the situation and I also make those people around me much more comfortable because people generally don't know what to say, how to approach you and whether what they are saying is offensive or not so if I start by saying "I'm fine... I'm good..." If I lead the conversation it generally invites them to be comfortable with me and realise I am a normal person who just so happens to be dying. There is a problem with this though because ultimately people then don't understand the extent of your illness, they assume because you are all happy and normal around them and getting on with things that things are much better than they are but this is what I choose on the whole, the important people in my life see the bad times, they see me cry when the pain gets too much, they support me through all the difficult moments, they know when an "I'm ok..." is actually a real ok. So I suppose what I'm saying is when I've posted a picture of a smiley happy me, or a day out just think about the process that went to getting to that point;- Was there a rest day the day before to allow it to happen? Am I actually feeling beyond awful and covering it with a smile? How many pain meds am I on to get me to be there? How many anxiety episodes did it take to get there? This and so many other questions lie behind everything. 

With my new MacBook purchase though it has meant I have finally managed to give my blog the little update it has been needing, whoop! So finally 2 years after my transplant I have updated my "About Me" page, it's only small but clearly explains the goings on and what has happened since. My "Related Pages" page has had an update and seems more appropriate to these days and finally I have sorted out my "Bucket List" page. Now I have a separate section on it now which is for Chronic Rejection me because there's a lot on the list that was obviously put there assuming I could do it but now it's simply impossible so now I need to think of new things to add to my list the my chronic rejection lungs can do :-) 

As always, thank-you for reading and chat soon
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