For life's little ups and downs.
I started this blog to tell my story, about who I am and what I do. I live with 2 mental health problems as well as a disabling and sometimes painful physical problem. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.
I went through hell due to bad diagnosis and poor clinical care, and I suffered a lot as a result. I do my blog to tell a story of hope and how a heart full of pain and sadness can find a beautiful light inside. I agreed with Cissnei in Crisis Core when she said that "Wings symbolise freedom for those who have none". I have always dreamed about having a pair of wings and being able to fly away from all of the things that hurt me in life. Sadly many times my wings were clipped or even pulled away and I was left with nothing.
I'll flap my broken wings and erase it all someday... You'll see.
Tuesday, 26 August 2014
I had a CT scan in March during a particularly long and difficult admission where I was in for nearly 2 weeks. It followed a life threatening asthma attack, OK so I didn't do myself any favours by trying to ignore it for days because I didn't want to go to the Alex (who does?!) and the doctors were wondering why I was only getting so much better at any one time and then declining so fast again. By this point, I had been admitted to hospital about 4 times in the preceding 6 months. We were told that the consultant radiologist who reviewed my CT scan had reported that apart from scarred areas which are typical of my condition, my CT didn't really show anything out of the ordinary. When I was finally told that the scarring was very pronounced and there had been airway damage in June, I was daunted but the promise that if/when these lungs are done, they would get me on the transplant list but until then, it could be 5-7 years and I should make the most of it. I was started on home oxygen and to be honest, since being on that, my quality of life has improved. Since being on it, there has been a huge turnaround in my life. I have a better outlook. I go out and enjoy myself. Heck, I even take pride in my appearance and enjoy making sure that I look as pretty as possible before going out.
So being told that on top of everything else (the asthma, the scarring and all the other conditions I have) that I had actually developed bronchiectasis as shown in my CT scan (yeah, the one in March that a consultant radiologist confirmed, during a case with another doctor, didn't show anything inconsistent with asthma). So I could have been had this condition and it being left untreated for 5 months and we didn't know. It bothers me because had this been picked up in March, we probably could have avoided the subsequent attacks and hospital admissions, we could have gotten on top of it BEFORE I needed home oxygen and the life threatening attack I had last week could possibly have been avoided.
I want answers.
I want to know why it was never picked up on before.
I want to know why medical staff involved with my care had actually lied in my records.
I also want to know why parts of my medical records have "disappeared", especially ones where clear indications were shown of my state of health and quality of life which would have been detrimental to the medical team involved and forgeries and falsified ones took their place.
I want to know why this seems to have become a common practice (I spoke to a few people who have had the same things happen. Volumes of medical records "going missing" and their existence being completely denied) and lastly, why is it even allowed to happen? Our medical records are supposed to be accurate and credible and show an objective portrait of a person's past and present health to allow a prediction of future health. These notes, whether they're on computers or paper, should follow a patient from the cradle to the grave and they shouldn't be forged or changed just because one doctor doesn't like what he sees or if a complaint is brought against them, could be detrimental to their career. After all, it is them who make the decisions in to how any health problems are managed, so I wonder, if I can't trust the doctors to make credible and accurate notes on my health and those notes not be corrupted, then in all respect, who can I trust? As I say, I want answers and there is no way in hell I am backing down until I get the, and the wrong things put right.
But enough about all of that, on a bit of a nicer note (music pun coming up) I have been learning some more songs on guitar. I love playing but haven't for some time because playing does take a lot of energy, so I play in short amounts and if I have to, I boost myself, especially if I'm playing and singing at the same time. The song I learned this weekend was one by a man called Voltaire called "USS Make Shit Up" which is about Star Trek and how they seem to make it up as they go along. I have watched a fair amount of episodes and it does seem a bit of a "Well this works here, but suddenly it won't anymore" which is quite entertaining, but it started in the 60's and the fact it's still going is something cool I think. I don't really like it as much as other things but I can respect it's longevity. The funny thing is that Voltaire is a huge fan of Star Trek and his observations on the series are both funny and affectionate. The music is fairly simple but there's something satisfying about learning a new piece, even if it is just a few chords. I wouldn't fool myself by saying that I am the best guitarist in the world, but I enjoy what I do.
I do wish I could play the flute again though. When I was younger, I took so much pleasure in playing the flute and my certificates for grades 1 and 2 are still on display in my bedroom because I was so proud of myself for getting them and achieving something. It may not be the most amazing thing to get, but having something to look back on and say "Yeah, I did that." is really a morale boost. Especially when I feel a bit rotten. That and some of the other things I enjoy like retro cartoons or listening to cheesy J-pop. Right now the song "Pon Pon Pon" keeps getting itself stuck in my head. The song basically translates to letting your crazy side out and do whatever makes you happy. The funny thing is when I was singing along to it in hospital, the nurses were wondering what I was on! It's one of those songs that you can't help but smile when it's on.
Ah well, I guess I am just going to have to see how things go.
Thursday, 21 August 2014
Basically the consultant has ignored everything that is contrary to his thoughts on my asthma, the most annoying was the clear desaturation I had when on air and the oxygen being reinstated by the nurse (saying I reinstated it when I didn't, I am not that stupid to turn the oxygen back on when it was switched off at the wall, that's for the nurses to do) I actually resisted when the nurse tried hooking me up to the nasals). I think it wasn't the content of the lie (it could have said "Has been growing a set of antlers" or some other rubbish and it would have aggravated me) but the whole practice that seems to have come about where lying to cover their tracks is the order of the day. I have taken photos of my records and I have that ready for when the time comes. It was funny when the respiratory nurse and some of the other doctors read my letter and said that it was all a pile of rubbish as the nursing notes clearly said the opposite. Heck the results of the previous breathing tests he was looking back at were in 2005! That's nearly 10 years ago and I was in a completely different place with it, I hadn't had any life threatening attacks or pneumonias.
Shes come up with a plan to do another full oxygen assessment with me, to prove her point that I should be on a little more and to give that one doctor the ultimate in "so there" as well as the other doctors who agreed that there is a COPD element to my asthma, probably due to repeated infection and these being poorly managed, and my asthma is anything but mild and manageable. Well, it'll all come out in the end, as for now, I will save on my indignation until the time comes when I can vent it properly and have something done about it because when it comes down to it, I am the one who has to live with it for the rest of my life. As for my supposed "not engaging" with their plans, I did engage, heck I made myself worse by doing so! I tried the new inhalers and had no benefit and I tried the new plans, heck I even allowed them to cut my antihistamines to just one (and now have the drippest eyes and nose I have had in a while). Luckily I have others on my side on this so I don't have to accept it. I asked for a second opinion. I got it. I then asked for another doctor as a tiebreaker. I dread to think what this more "detailed" letter is going to contain but I have my ammo ready just in case. The funniest thing was when the other doctor looked through my notes and then my discharge letter, saying it looked like it was from 2 completely different patients!
I think I am just happy to be home right now. Back in my own bed with familiar surroundings and away from being kept up all night by noisy patients (I can't get over the one patient, she was really funny, she pointed to the attention seeker and said "I can't deal with this irritation" which set me giggling and then the whole shout of "I have a itch up my bum!"and then her thinking I was the nurse, thats when it got weird! I won't go in to the scarring details but it would have been funny if it hadn't really happened.) The only thing I have to worry about is that I am now in the recovery stage of the attack, it takes time for me to get my energy and strength back after attacks. I don't leave the hospital well. I just leave less sick.
Having my meds bounced around so much just days after a serious attack is one thing, the fact that the attack was completely ignored by the consultant at the time. It says something when you check your peak flow (which they weren't monitoring on the ward, what the hell?!) and it's only just higher than what it was when you were first admitted and they had been considering ITU. Kind of raises some serious questions doesn't it? I am glad I got another opinion before I left, on top of the previous opinions of Dr Lal and Dr Brocklebank (they confirmed the bronchiectasis and the other doctor, who I have seen in clinic was the deal breaker) otherwise I would have been left up the creek with a mouth like sandpaper (common thing with Spiriva) and barely able to move at all without cranking my oxygen up. And this is what they thought was best for me?! I am going to get a call from the GP tomorrow and get their view as well as re-referred to the SBAU. As for now, I am re-adapting to Atrovent, I think I took for granted how much that stuff has helped me over the years and I will never be unfaithful to ipratropium again!!
I guess I have to think positive about things, they know a bit more as to why I have been so crappy and we finally know what those shadows on my X-Rays were.
Wednesday, 20 August 2014
The problem I seem to run in to with the consultant comes from the fact that he has never seen me in the throes of an asthma attack because by the time he can come to see me and review me, I am over the attack and am in that kind of shaky post attack stage where I am either very sleepy or I have started to bounce back. He didn't look much in to my history and was pretty sure that my asthma is very much the same as what I had 10 years ago (I wish!) and he didn't notice the A+E notes, the previous admissions or anything else. I do think that they had the 1st volume of my medical notes which hasn't helped but that then makes me wonder, where my other volumes are. In some ways it's like turning up at the cinema during the last 20 minutes of the film and only getting a small part of what happened. So all he sees is the kind of post attack which makes it hard to determine what my asthma is like day to day. He doesn't see (or have all the same evidence that everyone else has, as I said, a lot happens in 10 years) that I get so breathless day to day so I am glad I'm under a team instead of one doctor.
When the attacks are over, I can have (with assistance) a pretty alright quality of life. I'm not running marathons or partying all night, but I get by. Luckily for me, the other consultant, Dr Lal has seen me during an acute attack, as has Dr Brocklebank (who once attended me in resus and was finally turned around on all of this). The problem a lot of consultants, like my Dr Vathernan, have these days is that because they have so many patients to see, (he didn't remember seeing me in March, but he was there!) and they only see what they see when they see it, it's hard to decide how severe something is off a small chunk of the bigger picture. Sometimes, because I am a really complicated case, it can be hard to take in the whole portrait instead of tiny postage stamp sized portion of the picture. The other thing he seemed so focused on was just how much medication I am on and all he seemed to want to do was reduce and stop things. Luckily he saw the light with the nebulisers and listened when he was told that they work for me, he really wanted me off home nebs but I think after a good long chat, we decided to keep them but I would be best going back to SBAU.
I'm kind of on the last few desperate attempts to regain control. We tried taking me off some meds, which unfortunately didn't go so well. Again, (like a thing we did in SBAU where I was taken off EVERYTHING, stripped down and started again) which I could have told them would happen but I think sometimes they have to see it for themselves. We're trying a new medication called Spiriva. I have never had it before so I am willing to try anything. We did try going back to Seretide for my asthma but honestly, all that achieved was I had a small attack before bed last night which meant that I didn't get a whole lot of sleep really, took us ages to calm it down and by the time we did manage, I was too exhausted to care. My oxygen has been increased to 1-2l at rest (if we can get it to just 1l at night so that I stay comfortable and breathing easier) and I am going to be assessed by the respiratory nurse to get a special concentrator machine at home, along with my current 6 cans. It was decided earlier that this would be needed but the consultant had a hissy fit because he didn't want to accept that my asthma is brittle, but as the nurse said, it is sometimes a case of his ego gets in the way and being proven wrong annoys him, not to mention his idea that nothing has changed over the last 10 years.
I do have my diagnosis from an asthma specialist. I went through the process of diagnosis years ago and we started from scratch at the SBAU in Birmingham. The one thing I am really struggling to come to terms with is the fact that I have had 2 conflicting diagnosis' on the COPD matter. One person says one thing, another says the opposite. Who do you believe?! Dr Lal, who everyone sings his praises and rightly so because I have been seen by him a few times and he has exacted a lot of positive change in my life, or Dr Vathenan, who everyone is saying has a nasty habit of not listening to people and has in recent years started to become a bit past it. I'll entertain the Spiriva but I really am not seeing much improvement from it and all it has done is dry my mouth and that's it. But I said I would give it a week and I will do just that. I was told by the junior, who was wonderful and listened to me when I got upset about the pain, he said if I didn't feel any better after a week, call the GP and get back on Atrovent. It's all a little confusing to be honest and I was proud that I managed to keep on top of my asthma for 12 weeks (sometimes by the hard way but we got there) and the Jr doctor who has been helping me has agreed that chances are this was a blip on the road and a radical shuffle of my meds has probably caused more harm (or at least more frustration) than good really. Kind of what I said from the start (but what I do I know eh? I only live with these issues day by day, I wonder if doing an "I told you so" dance would be in bad taste?).
I am set to work with respiratory nurses to try and make the best of things but the final say so will come from the consultants. With 2 out of 3 of them on board, I can't see myself running in to any issues and the respiratory nurse agrees with me in that one. I think the main problem is that we can't definitely diagnose asthma or it's severity. Some patients could present one day very well and then at death's door later on. I think I am happy that I am going home tomorrow, the old dear across the way is driving all of us potty because she constantly moans and screams out "Please help me!" and loads of other misc moans can complaints and groans. I know she can't help it, but when you're trying your hardest to sleep at 2AM, you really don't want to have to listen to it, especially when they do what they can for her and all she does is attack them in return.
I was talking to the student nurse today and she told me how the family just dumped her here and refuse to take her away until she goes in to a home. I think when families do things like that it's horrible. It's like they no longer continue to be human beings and are just a nuisance to be "thrown away" just because the family can't be bothered anymore. The unfortunate thing is that they get left on hospital wards where they could pick up infection from anyone/anything and they increase the demand on the nurses as they have to spend more time tending to them as they can be very demanding, again it's not their fault, combative and no matter how hard they try, they can't seem to keep track on all of them, especially the wanderers. The other people this has a knock on effect on is the other patients in the bay. Because of 1 or 2 demanding patients who want to be nursed 1-1 all the time, regardless of whether they need it or not, not to mention the paperwork, the other patients don't get the level of care they need, and if they're a screamer, they sometimes end up keeping the other patients up all night as they don't know they're doing something they shouldn't. I've been cooped up with 3 screamers for the last few days.
One is just confused and sometimes asks us random questions, she's harmless really and every so often you just have to talk to her and it can be quite fun because she likes to talk about her children. We have one who randomly wakes up and asks for help to get out of bed, back in to bed but the nurses are being a bit tough and trying to motivate her to move herself. Again, once shes settled, shes no problem. It's the third one that makes the rest of us on edge (even the two ladies) because any time in the day or night she starts shouting, moaning and crying out, the nurses deal with her but never find any problems. She needs to be in a proper care home, where she can get the 1-1 care she needs, not being left in a hospital where she is obviously in a lot of distress, is scared and is making the others nervous and scared, I feel for her, I really does because all they seem to do is give her meds to help her go to the loo but shes obviously in a lot of pain and is very scared. I really hope they help her to safety and she manages to find a peaceful place to rest.
As for me, I am planning on discharge today (YAY!!) and I will probably call up and get advice regarding Spiriva as I am skeptical, I have needed my inhaler more today, we'll try anyway. We don't know what we can achieve until we try do we? But I can can say that Seretide and I won't be mixing again, just doesn't help me and well, I was kind of annoyed that they made me open a new inhaler to have 1 puff and it do that to me. I took it and this sudden pain and tightness hit me, before I knew where I was, I was really struggling and needed a lot of nebs to get settled down, so I am back on my Symbicort, so really not a lot has changed but at least we know that I have developed something as well as my asthma so there is more of a reason for my issues now with the bronchietatsis and airway scarring which is unfortunately a forever deal so I have to just do what I can and see where we end up. I can't wait to get home, the care here was great but I am not going to miss the patient going berserk at 4am!
Sunday, 17 August 2014
It's no secret that I have suffered with mental health problems for many years, ever since I was about 7 years old. I had severe depression as a teenager and ended up having to see a psychiatrist as well as being offered antidepressants at the age of 13 (we never took them because we didn't want me to have to fight a drug addiction as well, it was the right decision at the time) and my adult life has been fraught with mental illnesses. I have been sectioned before (luckily it was only a couple of nights so I could clear my thoughts and get some rest) and I am on a number of medications to help me, including the antipsychotic medication Quetiapine (Seroquel). I suffer with bi-polar disorder, obsessive compulsive disorder, borderline personality (schizophrenia) and have battled against eating disorders (at one point, I was just 7 stone and my bones poked out of my skin), self harm and have even made several attempts at suicide. I am not ashamed of this though and I am very open and honest when people ask me about my mental health.
I know there is a stigma about mental health and a lot of us are made to feel ashamed of our conditions. Maybe it stems back to the times when people with these kinds of problems were locked away in prison-like asylums and treated like animals by the "attendants", subjected to cruel "experimental" treatments and generally abused because no one really cared enough to say "Stop it!" I have read stories about how some patients were abandoned by their families and locked away, made to undergo cruel practices like ECT. People who had confessed to alternative sexuality and were made to undergo a "treatment" for it. The things I read were horrifying and it made me wonder if things are really much better for people with mental health problems now? Unfortunately I can't really say as I have only had few dealings with the mental health teams directly, including a crisis team when I was going through a lot all at once and needed help.
I am more experienced in the care of physical illness and often require hospital admission and care. I see a lot of people whose mental health has declined over the years and have developed severe dementia. It isn't their fault and they don't understand what they're doing but I do feel that better provisions should be made to care for the elderly, the senile and those with other mental health problems instead of shoving them on medical wards to run the nurses ragged and be detrimental to the recovery of other patients. The other issue here is that an elderly person on a ward full of sick people is at risk of contracting an infection. It's kind of a cat among the pigeons really.
Some patients don't need to be here and are only here because of "granny dumping", where families take their elderly relatives to A+E and leave them there and refusing to take them away again so they end up stuck on wards, bed blocking. It is one of my pet peeves admittedly because I have seen it so many times and have been stuck on a ward with an old person who doesn't know what they're doing and sometimes they tend to wander, putting themselves in all kinds of danger so the nursing staff have to run around after them instead of caring for other patients. There is a patient on the ward I'm on now, shes been shouting "Nurrrrse!!" and a load of other things (some were rather unpleasant) since 6 this morning, waking everyone in this room up. She kept saying about how she wanted to go and find her children and the poor dear doesn't understand that she is actually in a hospital and she got more and more abusive towards the nurses, especially when they told her to hush up as she had woken up all the other patients.
On MAU, I had a run in with one lady who had decided that my blanket and Sephy were hers and that she had had them from the start, luckily the nurse recognised my belongings and said to her not to touch other people's things. She also had her eye on my tablet and my oxygen bag so I had to hide them away! Her other habit was wandering off so the nurse had to keep a very close eye on her, despite being run ragged by other patients. I felt so sorry for the nurse, she was lovely and she had so much to do all at once. It can't be easy.
I saw the doctor again today, it's funny that years ago, the doctor was my consultant and we didn't really click but now we get on really well and hes really changed his mind around asthma and how it should be managed. He was a bit worried as my chest really played up last night and we had an unsuccessful attempt to reduce the oxygen I am on. We are trying to get me back to my usual flow of 2l via the nasal cannula from the 8l through a mask. We have also added another antibiotic in to the mix and we aren't having issues regarding my lorazepam anymore. I had to explain that I have it as a part of my asthma treatment as it helps to relax the muscles around my airways to stop it all from getting too stiff, the side effect of it though is that it can make very sleepy which can be a problem as I was admitted because of my asthma being a pain. We also added another antibiotic to the mix to help me really fight this infection off, still. The worry was that I coughed up a bit of blood (because of all the coughing, I upset something inside) but they're keeping an eye on me and things should start to move forward soon.
I really hope that everyone else is having a good weekend!
Saturday, 16 August 2014
As I have mentioned previously, my attacks tend to come in stages. Usually you can tell if I am either about to or am starting to have an attack by observing my behaviour. Usually, before an attack, I become very withdrawn and spend more and more time in my room hiding from the world. I become quieter than usual and I tend to leave a "trail" of things I've been doing as I find it hard to keep my interest when my attacks start. I also cough. A lot. And my breathing sounds wheezy and I start gasping for breath because it gets tighter and tighter until I start a nebuliser. Nebulisers at home aren't as common as they used to be, in fact, I am one of a few people in my local area to have one, especially at a young age. The nebuliser machines I have are brilliant pieces of life saving equipment. When I have a nebuliser, I use Salbutamol (Ventolin, blue inhaler) and Ipratropium (Atrovent) every 4 hours. During acute asthma, I have my Ventolin nebs and I usually have a margin of up to 15mg Salbutamol and increase my oxygen slightly to 4l before I have to admit defeat and call for an ambulance.
Although I avoid hospitals like the plague, not all my experiences have been bad and there have been many times where an admission to hospital has saved my life. As soon as it happens enough, doctors do learn the pattern of your condition and quickly know what's normal and what's not. Even my friends and close ones know what is normal for me and when I am going rapidly downhill and need to either get seen by a doctor or when I have to medicate. Most cases, we can get it settled down with 1 or 2 nebs, maybe some pred and of course pain killers to ensure that my recovery process starts pretty much right away and pain isn't left untreated.
That in itself is a weird one. Not many people appreciate how painful asthma attacks, and the aftermath, can be. If you really look in to the mechanics of it, you are working your muscles hard to try and get the air in, and you do wind up using a lot of muscles that normally wouldn't be used (accessory muscles) around your shoulders, neck, collarbones and your entire ribcage. I have pulled my chest muscles more times than I could count and cracked ribs enough times to know just how uncomfortable it can be, not to mention the pain from the residual inflammation and soreness of your airways after an attack which can be so bad that the only way I can ease it is with lorazepam and morphine (2 very strong drugs which act on the CNS to try and ease pain). So after an attack, it's kind of normal for me to just want to sleep for a while and feel like I've just run 10K.
So, what do you do when someone has an asthma attack? As I said before, I am one of a minority of people who use a home nebuliser so other asthmatics should carry a blue "rescue" inhaler around with them.
1. Try and get the casualty to sit up as much as they can. DON'T lie them down as this can make their breathing harder. Try and get them to take slow and steady breaths.
2. Reassure them. Its a frightening thing to happen so remember to think as scary as it is to a spectator, imagine if you were the one going through it. Listen to them if they tell you something as they have had attacks before and probably know more about whats going on.
3. Get them to take 2 puffs of the "rescue" inhaler.
4. If that doesn't work then get them to take 2 puffs on their inhaler (preferably through a spacer if it's possible) every 2 minutes, up to 10 puffs.
5. If that doesn't ease it or you really are worried or unsure, call 999 and get an ambulance. They often say that they prefer to come out to someone before they get critical than if you leave it too long.
Yesterday I had a lesson in leaving it too long. I kept trying to tell myself I was find and that one more neb would do it. By about 4, it became completely obvious that this wasn't to be the case and I first tried to get a hold of my GP and the receptionist begged me to dial 999 and that's what we did and well I'm not 100% sure what happened but things did get to a "life threatening" state when my oxygen levels suddenly fell and apparently I was in and out of consciousness. All I really remember was feeling a bit sleepy, and then waking up in one of the resus cubicles hooked up to monitors and machines and with drips everywhere. Scary!! I did probably let it get out of hand because I am just scared of the hospital because some of the experiences of the past. But now I understand how important it is to get help sooner rather than later.
I think that the longer I was away from it, the more I managed to convince myself that this was a bad place. This was a scary place and I was going to be left in pain and not be helped. Nothing was further from the truth which I realised when I had about 3 nurses, 4 doctors and Natt sat to the side urging me on while we all fought. We won the battle but there were talks of ITU and I had the ITU doctor come to see me, problems with getting an ABG from my wrists (4 attempts and even one in my femoral artery, we couldn't get a sample! We had some venous samples but it took several attempts to get my arterial sample!) and my asthma generally refusing to behave itself. It took us a while before I was stable enough to move to a ward but now I am here, I am well and truly on my way to recovery, a bit battered and bruised but I am here and we did win the fight and I'll no doubt live to have many more where that came from.
I guess the next thing I need to do is concentrate on getting better, improve my breathing and infection and then get myself down to my usual 2 litres instead of 8, although I am going to need to keep my wits about me as there is a new patient on this ward, a 94 year old lady who sadly doesn't know whats going on and has already tried to walk off with my Kitty blanket (grrr -MY- Kitty blanket!!), Sephy and my oxygen! Luckily she seems oblivious to my phone and laptop! It isn't her fault but she will probably need supervision so that she doesn't hurt herself (or any other patients) but I know I'll be sleeping with one eye open!
Thursday, 14 August 2014
It can be tough to accept when you have limitations. Especially when you never really used to have them. I wasn't born with my conditions as bad as they are and they only got worse due to certain circumstances, living in a place where poor hygiene was the order of the day and other things that made it get worse. Perhaps had I not gotten the pneumonia I had when I was 21 (the first one that was in both lungs and on that one night almost killed me) then maybe I would have been better now. I could pick the past apart for hours and point out where things went wrong, but what would it change? Would scrutinising the past obsessively make my life any different or any better? Not really. If anything it would make me more angry that this whole thing happened in the first place. I am trying to take a more pragmatic look on things and instead of thinking "What if...." focusing on "What is."
One simple joy I had forgotten about was sitting at a table and having a proper "sit down" meal with my friends. Sure, we go to the pasty shop or Subway, but there really is something different about the group of us going to a proper restaurant where everyone is dressed nicely and sitting around a table and talking animatedly over a meal. It was really nice because we didn't have the usual distractions, (the food was absolutely delicious!) and we all managed to sit around and just talk about everything and anything. I love going out with people and having those kind of interactions because its the one thing I really miss. I miss going out with friends for a drink, walking around Hanley with Cat and having a drink and lunch at "Spoons". It is one thing that being ill has taken from me and now whenever I do go out, I have to plan everything out and plan medication around everything.
Everything is done in 4 hour chunks as every 4 hours I have nebulisers and pain medication. Around 5 is my second dose of "3 times a day" meds and I tend to do my last nebs and meds around 11pm when I go to sleep. It is a kind of routine and it is important to keep up with it, no matter how much that can interrupt with having a "normal" life. The fact is, without a lot of these meds, I would have died a long time ago and I can't afford to get lazy or complacent about it, even if it is annoying or hard work. It's just one of those things really and when it's done, it's done. I don't mind having to do things like taking my nebs in public anymore or having to take my morphine. Yes people do sometimes stare. And I have been subjected to some rather unpleasant comments but to be honest, its my condition and I am the one who lives with it day to day so no one else should really be allowed to upset me about it and the only person who can stop them from making me feel that way is me. I know my life, I know what it feels like to struggle for breath and I am the one who manages it day to day.
I suppose "normality" is what you want it to be. For me, I just have to remember to take it easy and accept the help I get from the friends who have been so kind and so generous with their time and patience to come over and help with taking care of me. I think it is hard, especially for people who knew me before all this, to be able to help someone when they're weak or feeling unwell. I am thankful to have supportive people around me because without them, I honestly don't know if I would be here today and I just wish I'd reached out earlier really. I guess I didn't because I was scared of what they would have said or what would have happened. It doesn't really matter now, but I would definitely advise others in similar situations to ask for help. I'm not a victim of an abusive partner anymore. I am a survivor.
I think it is all a matter of perspective and how you see yourself. Some days my tank feels like an anchor, other days, its like a jet-pack that makes me able to go and do things. My chair isn't holding me back, it's pushing me forwards. I believe I survived all of the things that happened for a reason, although I am not sure what that reason is sometimes, and I will carry on doing what I can to keep going and keep on living.
Monday, 11 August 2014
Its been a bit of a tough weekend for me, my chest has been playing up because of whatever it is that's left it so upset. I'm starting to think that it needs no "reason" to do the things it does but having the confidence to do what I need to (when I need to) is important too, I haven't had to call it yet but earlier, it really started getting close and I was starting to worry. It's not that I have anything personal against it, I just don't always feel confident in the local hospital. After some of the things I have experienced though, who could blame me really?
As I say, the whole place isn't categorically bad as such but as usual one bad apple can taint the rest in the same way that one or two doctors or nurses who aren't, lets say, that good with asthma can make you feel afraid of the whole lot. There were other things that made me fear medical help but I try and forget that because it was one person trying to assert their dominance over me to cover up the lack of control they had in their own life and to be honest, they don't make the slightest difference to me or my life now. I find that it can be frustrating when doctors don't listen to what you're saying or take notice of the symptoms in front of them. It doesn't happen all the time, but when it does, it can make you feel like a right old fraud and want to walk out. Asthma isn't easy to understand for us who have to live with it, let alone someone who has only really seen it from an outsider's point of view.
The worst treatment experiences I have ever had at the Alexandra Hospital have been on the Medical Assessment Unit, Female ward (MAU F for short). Usually this has been down to the nurses who only care about one or two measurements and don't look at patients as a whole. I had one occasion where I had been feeling unwell and had woken up gripping my side as it was painful only to be told "Just go to sleep." (gee, if it were that easy I wouldn't have woken up in so much pain now would I?!) and there was another occasion where the nurse didn't feel like getting me my night time medication because it was 4 in the morning and she felt that A+E should have done it! I then had to explain to the staff why I was still awake and why I was in pain, the nurse was told that she was wrong but that's not the point is it? Not to mention that traumatic incident last year when I had been left in pain for 12 hours because a nurse practitioner was refusing to do her job and kept crossing off what the doctor prescribed.
The point is, when a patient needs caring for, the nursing staff should do as the doctors say. Another one was when I was prescribed back to back nebulisers (which basically is non stop nebulisers which take about 10 mins each) and after only having 1 in the space of an hour when I should have had more, I spoke to another doctor and asked if I could just use the solution I had in my bag instead! They agreed and said that really they should have been done by the nurses (who were sitting around the nurses station watching YouTube videos) and that I shouldn't have had to do it all for myself. I did put complaints in and they were told off for what they were doing but it does leave a mark on you and it does make you not feel like you can trust the people who you're supposed to trust with your life. I can't fault the staff in A+E, they do a great job despite being overworked and underpaid and the staff on other wards tend to be lovely and helpful but you do still come across the one or two who don't seem all that fussed with patient care.
Last time I was in, I was admitted directly from clinic by my consultant and the next day I was moved off MAU F to another ward (thank goodness) and this admission seemed to have a more positive outcome. Something had to change and I am glad that it did. Admittedly, I wouldn't go as far as to say that I like having oxygen at home, but I like the fact that it has allowed me to do things that before, I never thought I could again. I can go out and do things, enjoy shopping with my friends and even go out and socialise with people again. I feel like I can live what I would call a normal life. One where I'm not struggling to breathe constantly. One where I could walk up to the shop and back without my oxygen on.
We are talking about reasonable goals. Realistic things to aim for. I don't know what is possible and what isn't yet because, well I haven't tried and can't say for sure. Maybe one day I will be able to walk to the corner shop and back without having to rely on my oxygen tank. Maybe one day, I will be able to go in to town without my wheelchair and be able to walk around, even if I have to use a crutch or a stick to do so. I want to make sure that I am as healthy as possible because I have read countless stories about people who get sick and die young, leaving their loved ones in a state of sadness and loss. I never want to do that to the people I care most about. The thought of dying young and leaving the people I love to feel sad makes me feel so unhappy and I realise how selfish giving up really is. When you give up trying to make your life better, you give up on the people who you care about and love the most. In the same way that self harm was a selfish act. I know I won't be running marathons or walking all the way in to town and back. But if I could be able to manage short distances then that would feel like an achievement to me.
The important thing is not getting too disheartened if it doesn't go the way we want. Even if I only see a little improvement in myself in any of this, then at least I'm still trying instead of resigning myself to being stuck in a wheelchair for the rest of my life. If I can, I will get myself back on track and I have the inner strength to stick with it and family and friends to keep me motivated when things get rough, on top of that, I have a boyfriend who makes me feel like anything is possible when I think of him. Having the support of the people close to me is really a reason to keep going and as they haven't given up on me, nor should I because to be honest, giving up and letting yourself be miserable and not changing anything is worse than not doing it because people said you can't. It's all about being honest with yourself and getting to know your condition better than anyone else.
It is better sometimes to think of things in terms of what you CAN do rather than what you can't. For example, I can sit and use my Powerball for about 10 minutes at around 7000rpm. Maybe I can aim for 15 minutes at 7000rpm or 10 minutes at 10,000rpm? I have noticed that I have been able to hold things easier in my right arm, last night I was able to get a mug off the side (something that usually results in shaking and a mess all over the bed and floor) and not spill a drop! That is quite the accomplishment for me. I know it doesn't sound like a lot to anyone else, but the weakness in my arms was becoming something of an issue. When you don't move around too much over time, your body becomes atrophied and weak, as a result, small things become harder to do. It's instinctive that as you find yourself getting breathless and worn out in doing things to stop doing them completely. We all do it. I am trying to counter that because, well, I hate inactivity and want to be able to do things for myself again. Amongst other things.
Sometimes the things we want are the things we need to work for. I lost the weight that I put on through pred and olanzapine and now I really want to tone myself back up. I have been wearing more feminine clothes recently and it has been such a boost to my self esteem. Look in the mirror every day and find at least 1 thing you can like and focus on it. To me that is my hair or my eyes. My skin is glowing (thanks to me drinking more water) and my hair is growing because it's being well cared for. I take pride in how I look and when I go out, that self pride and confidence really shows. After all, if I can't respect myself, how can I expect someone else to?
If you walk around town, unwashed and uncaring of your appearance then you deserve to have people shout horrible things at you, I'm not saying that everyone should be vain, but I think people should make sure they look at least halfway decent before going out, and washing is just part of this whole "personal hygiene" deal. Personal hygiene is important to me anyway. I can't be around someone if they stink and don't take care of themselves. It shows little pride and care in yourself to at least make sure you're in clean clothes, have washed and aren't crawling with who knows what. It's coming up to that time of year when the kids are crawling with lice and as they're going back to school soon which means that lice are going to be everywhere so we'll need to take more care to avoid it.