New Years Joy

Hi all

 

Well here we are on the eve of 2013. I'm sure many of you will be expecting me to write a miserable rant about how crappy 2012 has been and show little hope that things will ever improve (as in previous such blogs). I may just surprise you for a change...

 

2012 has truly been the positive year for me. For so many years previously, things have been what I deemed 'unbearably bad'. I struggled terribly with poor health, which saw me spend more time in a hospital bed than in my own. As such I went on to suffer severe depression that seemed to have no let up. Many a day was spent laying in bed unable to think, unable to process even the most basic of tasks. Everything seemed unachievable. I had managed  (I don't know how) to lose the ability to even think about tomorrow, let alone be optimistic about it. As such all my mind was filled with were ways that I could end the misery I was living. After enduring this for a good 8 years, I never invisaged a day when things wouldn't be like this. A  day when I wouldn't just spend every second 'surviving', instead of 'living'. And all the while I did maintain one thing, the ability to pretend everything was 'ok' to my friends and extended family. My nearest and dearest of course knew what I was going through but no one else did. I would literally say goodnight to people, close the door bearing my perfected faux smile and break down. I would cry and whail uncontrollably all night. Always imaginging how much easier it would be if I were just to cease to exist. The reason I am telling you all this, is not because I wish to harp on about how naff my life 'is' and what I am 'enduring' but quite the contrary. I'm telling you all this to show you how naff my life 'was' and how much I 'endured' but no longer 'endure'.

 

This year, quite out of the blue my life changed. I don't have great health, I am still very much the same health wise. Infact my joints are so ravaged now I can barely walk the length of my street. And despite this, despite a lot of things that have worsened from a health perspective.... I am inexplicably happy. That's right, you heard me, Gemma say that I am 'inexplicably happy'. Life appears to have thrown me not one but many trump cards. I have so much to be hopeful for.

 

Not least, this year I have met my boyfriend. It sounds like the most basic of things to expect from a partner... but Sean has genuinely been a major driving force behind me developing my self esteem. a few years ago I felt like I had something to offer the world. I felt bright and intuitive. I felt good at my job, and felt like I was really making a difference. All that was lost when I had to give up work. After a long period of feeling surplus to requirement and with no real place in society, Sean has shown me that I still have it in me. He has been the initiative behind starting Lamtons Ltd and has given me a lot of responsibility. Never questioning whether I should 'do it this way', or 'let him check first'. He just tells me to get on with it and encourages me to trust my own decisions. To most of you, just 'getting on with it' probably sounds like no great achievement. But for me to trust myself, to know that I have a crucial role in this has been life changing. I wake up every day now and know I am needed. I know there is a reason to get out of bed. 

 

And I can't forget to mention another big reason that this year has been great... I got to fulful the number one thing on my Bucket list, going to an Olympics!! There are no words to describe how happy it made me to fulfull this dream. I wrote a blog about it at the time so wont re-live it all for you but it was simply magnificient :)

 

We have just spent our first Christmas together and it's been great. I've never woken up anywhere on Christmas morning that isn't my parents house. It was a really strange for me. But we got to see Sean's mum that morning and then went onto my parents for lunch and the afternoon. It was a great day and the house hopping continued until after boxing day. We went to see Sean's sisters and their partners and kids. Kids definately make Christmas. Loved seeing them rip open their presents and the excitement on their faces.

 

 

 

My brother and his wife were back from Cambodia and so we were all really excited to have them home. His wife Vanna is here for her first UK winter. I think it was a shock to the system after coming from a country that rarely sees tempertaures drop below 30 degrees C and when it does they all get the woolies out. But she seems to be loving seeing all the lights and trees etc. She tasted her first parsnip and first brussel sprout at the table for Christmas dinner. Sprouts were a miss, parsnips were a hit. We also went to winter wonderland yesterday with her and I dont know how she felt about it all but it was a bit of an assault on the senses from my perspective. So loud, so crowded. It was insaine. I dont think I'd go back.

 

 

 

This year is mission 'save every penny'. We hope to be in our own home by next Christmas. It means being boring sods all year and not going out much, or buying any more Costa Coffee (booo!) but it'll be worth it if we can be in our own place. Just can't wait to be somewhere that we can call home, and decorate it exactly as we please. Theres only so many magnolia walls one person can take (my flat) before you go stir crazy.

 

So we are both very excited for the coming year. We have a great deal to look forward to, more than I can write down in this blog. And as such a great deal to be thankful for. I am finally seeing life for the rich tapestry that it is. No more tears, no more time spent wishing my life away. It's time to start living. Happy and Healthy new year to you all xx

 

 

Holidays, MRI's, Neuro and Christmas :)

Hi All 

Its been a long while since I've blogged. Have been kind of busy with a few different things and I guess it slipped my mind. I noticed someone else was blogging and posted the link on facebook so it reminded me I really should crack on with some writing. 

Loads of stuff has gone on. Most of it positive I must say - which is never a bad thing! I'm sitting here trying to wind back the memory to tell you about it all but I'm not having much luck - my memory sucks.

I went away with Sean and his family to Spain for a week in September which was fun. We had really naff weather but we had a laugh anyway. It was great to get to know everyone a bit better. Following that Sean has mostly been away with work in Belgium. So we haven't had the opportunity to do much the past few weeks.

At the harbour in Puerto Buenos, Spain

We have managed to launch a new online business which sells baking equipment and tools for cake decoration. The sales took a few days to start rolling in, but then before we knew it things were really picking up. At the moment there is a bit of a dip but we are slowly finding our way out again, it's all a bit of a price war. The business sells on Amazon so you really have to keep your head in the game to see what your competitors are doing. I am learning a lot I must say. 

As far as health is concerned, I have been relatively stable with my chest for the past 3 months. I am so grateful for the break from hospital admissions and IVs. I still have days where things are really difficult and I'm struggling to even get out of bed but thankfully at the moment that isn't every single day.

Since the drama at the neuro-physio appointment that put me in hospital, I haven't been able to do much physio. This is because the physio isn't keen to get to hands on for fear of causing too much damage since we were still awaiting the results of my MRI. Thankfully they are now back and go someway to explaining the problems I'm having. I have 5 bulging discs in my thoracic spine, a couple more in the lumbar region and my bones are osteoporotic (thin) in the thoracic area particularly. I am obviously pretty upset that there is so much wrong and its going to take a lot or physio and potentially a neurosurgical review to sort out. At the same time though it's a relief to know that there is now a clear cause for my ongoing pain and I'm not such a mystery any more. It's also nice to be able to tell anyone who doubted me that there is a true cause for this. And I'm not some sort of drama queen. A specialist pain management team are going to see me since the review of my MRI so I will be glad if they can offer me some relief. I was told the pain team can offer acupuncture which I would be keen to try as I don't want to be reliant on strong pain meds.

I've also been discharged from neurology in terms of my seizures as he and his colleagues confirmed that the reason for my seizures was associated with gas exchange in the blood (caused by my asthma and the damage it has done to my airways over the years). I am so glad to able to get rid of one specialist at least. I want the most minimal intervention, I don't want too many people getting involved in my care as it just complicates matters. In the past my teams have been keen to get new people involved  for new opinions all the time but they seem to take the same stance as me these days and just keep it to a minimum for my sake. It's a case of too many cooks spoil the broth I'm afraid. One of each speciality is quite enough! The neurologist has contacted my Brompton team so they will put plans in place to sort this gas exchange issue out if they feel its necessary.

As far as my local respiratory team are concerned, I've decided against going back to them as well. The doctor although very nice was not doing a lot. He promised many things, over the years - with the best intentions but he never came through with the goods. I have changed to a different team who I met on an admission a few months back and were very proactive. They arranged my portable oxygen (I had waited for my other respiratory doctor to fill in the paper work for 3 years) within a matter of minutes. This has been a real godsend as far as travelling any distance is concerned. It's small enough that we can just chuck it in the boot in case of an emergency and they have conservers on so a tiny bottle can last about 8 hours. So fingers crossed there wont be any more dramas where we are in the middle of nowhere and miles from any hospital with no oxygen. 

Other than all that, I am in full swing for Christmas and have done a lot of my shopping online this year which makes things a lot easier. I hate aimlessly wandering around shops for hours trying to find something someone might like. Nope! This year I came with a plan. And am pleased to say I have most of my shopping done now.

Will try and write sooner next time..  adios!

PS. Saw this and thought I'd share with my other friends who struggle with health complications.. 

Very true

An unexpected drama at the Neuro physio appointment

Since the Olympics ended things have gone downhill. I'm really glad things didn't go wrong until after the games, I'd have been really upset to have missed any of the action.

As I have talked about in my previous blogs, I walk with crutches as I have hip and back problems. I suffer from chronic pain in both but last week my back pain became much worse. It seemed to gradually increase over about 3 days. I was up all night walking around and was really fidgety as I was trying to get it to a level where the pain was manageable. I had neuro-physio coming up on the Tuesday and that day couldn't come quick enough in my mind because my physio has a knack of reducing my pain by using pressure points to release muscle spasm. Unfortunately when I arrived I was in absolute agony and no matter what she tried it just didn't seem to help at all. In fact, I think it made it worse. I could feel my eyes watering and at one point I was silently crying because I really didn't want her to see me being such an idiot about it all. When she finally finished, she asked me to sit up, which didn't come easily. Unfortunately as I sat up, I projectile vomited everywhere. Thankfully she managed to move out of the way just in time and spared herself. After that I just sat there swaying with my eyes closed feeling really faint. I must have looked like a right numpty!! I told her I needed to lay down as I felt so bad. She called the doctor over from the other wing to take a look and they checked everything. I had really low blood pressure and my oxygen levels weren't great. I think the stress of the pain was causing all this. Any who at some point during all this I did actually pass out, and woke up to find an ambulance crew stood next to me. I really didn't want to go in  but they weren't giving me any option, and with that much pain it didn't look like I had a choice, it wasn't like I could walk out of there. They took me to one of the local hospitals.

I was seen really quickly at the hospital and given some painkillers to try and ease the pain before they examined me. I never understand why they always try and give paracetamol  (the weakest painkiller in a pharmacy), to a patient in severe pain!?! As was expected, paracetamol did sweet F A, so they gave me some oramorph aswell. This didn't help either, as I use this at home intermittently for the pain and I have a certain tolerance to the low doses which means I don't really get a lot of relief from it. Eventually he offered me some IV morphine but as  good as this is as a painkiller, I knew he would never get an IV in me. I always go through the same battle with them time and time again. But I did have to eat my words when he got one in first time, albeit in my little finger! I couldn't knock the fella, he did a good job there. Perhaps my veins have had a chance to heal during the period I've been well.

The doctors at the hospital were concerned about a fracture of one of my thoracic vertebrae. Mainly because I have some degree of weakening in the bones due to steroid dependency for the last 15 years (for my lungs). I had a thoracic x ray and it was clear of a fracture but the x ray managed to incorporate the first 3 lumbar vertebrae as well and the doctor told me he could see that there was literally no space between them, they were sitting one on top of the other. As you can imagine bone rubbing on bone can be incredibly painful. I didn't want to stay in the hospital as I had an appointment with my own doctor/GP that evening and my physiotherapist had had a long discussion with her about putting me on a new medication called Gabapentin which is a drug that directly targets nerve pain. This seemed like a good option as the analgesics I've been on until now have a wide variety of uses and so don't necessarily act on the areas where I need them to. The doctor wanted me to stay as the analgesics weren't totally relieving my pain, but I figured that I'd only be stuck in there for days on end, being given loads of opiates, only to leave for home with no better idea of what was going on than when I came in. As it was, by the time we left I was too drained and in pain to get to the GP anyway. So Sean called them and explained the situation and asked if we could pick up the aforementioned new drug prescription so that I would be able to have some relief that night. They agreed but we needed to wait to hear back from the doc that night as he wanted to talk to me. But,  low and behold..... he never called back so I was left with NO pain relief that night. I was so angry and so upset. I was in agony and this just wasn't fair.  Thankfully the next day I was able to see my own doctor who gave me a script for the garbapentin and also played around with the dosages of my other medications, adding in tramadol as well. This has really helped over the past few days and I have finally managed to get some sleep.

The physio visited my house a couple of days later to see how I was doing. I was using my oxygen a lot as the pain killers were affecting my breathing. But without them I would have been climbing the walls so it was a necessary evil really. She was a bit concerned to see me laid up in the bed, still in pain and quite knocked off by the medication. She decided not to do any physio work that day as I was still in a fragile state and she didn't want to risk aggravating the injury. She consulted with the GP and together they decided they want me to have an urgent MRI on my entire spine and have referred me to see a neuro surgeon at a clinic in Dorking. They think my symptoms match with a slipped disc which may or may not need surgery (if that's what it is found to be). This has worried me as it seems pretty serious stuff but I am glad that they have been proactive in trying to find a cause for this as throwing drugs at it and treating it conservatively (as has been a habit in the past) is really not a solution.

I'd really like to start a family at some stage and so having long term issues with my spine and hips is a big worry for me. I am worried the pressure on my spine and hips as the baby grows will be majorly problematic for me and the  baby. I don't want the pregnancy to be one where I am laid up for 6 months of it in pain. That wouldn't be good for the baby. I asked the physio about this today. I know its not a pressing issue for right now but it was just something that was nagging me and I wanted to ask her about it so as I knew what to expect in the future. She really put my mind at ease as she said both her and her sister have had this injury and they were both able to bare 3 children each. She said that they actually found their back problems improved during pregnancy (who'd have though that!?!) as the muscles around the back relaxed to accommodate the babies growth. Apparently it's a common occurrence. So thats one less thing to worry about anyway. I'm waiting to hear when my appointment for the MRI and Neuro surgeon is. I'll no doubt blog about it more when I have them - should be happening in the next two weeks. 

Living the Olympic Dream - One crossed off the Bucket List

Hi Folks

This week I am gloriously happy. I don't think in my entire life I have ever been able to say I have been 'gloriously happy'. There is usually something niggling at me. The reason for my perky mood is that I got to attend the Olympics on Monday 6th August. And not just any Olympic event, I actually got tickets for the stadium so I was in with that huge crowd. I'm sure many of you are probably sick of hearing me bleat on about it, not least if you follow me on Twitter or are a friend on Facebook. But it has been a dream of mine to go to an The Greatest Show on Earth since I first understood what it was all about around aged 12. I never actually expected it to happen. So when I got my tickets offered to me in the ballot I was speechless. I remember just weeping like a complete nutter. I'm remembering it here as I type and its making me well up now as well. I know it must seem strange to some folk that I am such a die hard fan of the Olympics. I can't put my finger on what made me start loving it so much, all I know is 'I do!'. I will watch any event and when I originally went into the ballot, I ticked every single box for every single sport for both Olympic and Paralympic sports. I wanted to see it THAT badly that I didn't care what sport I got as long as I got to go.

The excitement on the build up to it over the last year has increased exponentially the closer it has come to my big day. My brother Ben is as nuts on the event as I am and so I was really excited when he was planning to come back from Cambodia just for the games. Unfortunately, due to the ridiculously high prices that flights cost it was unachievable. I had four tickets so I invited my uncle to take my brothers place. We are a bit sport fanatical as a family. That is to say, we love watching it haha, not actually partaking. 

The day started really early, 5:15am - this makes for a very tired Gemma. But spirits were high and my boyfriend Sean was kind enough to drive us up to Stratford for the main event. The park is absolutely huge. The TV set doesn't really do it justice. There is so much to see!! I took the wheelchair for the day, I never would have managed even to get to the Olympic entrance gate without it. Everywhere is a lonnnnnng walk. I'm really glad I made the decision to do so or I would have missed a lot of the magic.

Outside the Olympic Park

Ready to go into the Stadium :)

When we got settled in our seats there was enough time to soak up the enormity of the stadium from the inside. Everyone on the opposite side in the tiers just looked like dots. On our day (Day 9) the stadium was full to capacity - 80,000 people. Even though it was the qualifying heats, it felt like a medal event. The atmosphere was absolutely electric. Whenever anyone ran past on the track or anyone threw a shot put/discus on the field, the crowd just erupted, no matter what country the athlete was from. We were lucky enough to see the 1500m qualification round for the women, 800m qualification for the men, the Women's Shot Put, Men's Discus and 200m Hurdles for the Women. So much to see, I just didn't know where to look!!

Hannah England in the 1500M Qualification - she's wearing the knee high white socks

We all came in our Olympic T shirts, waving flags all the way  and with a lot of Olympic fever!! Was great to see so many people from so many nations doing the same. I even painted my nails with Union Jacks. A day I will remember for the rest of my life, so lucky to have shared it with my loved ones too. I have some great photos and I cant wait to get some of them printed. Now the heat is on to get some Paralympic Tickets on the official website. I would love to see some Wheelchair Basketball and Cycling, though as always, any sport will do for us :) 

 

Transplant Week, Businesses and Psychic Mediums

It's been great this Transplant Week to see so many people promoting the cause. On facebook loads of people have been changing their profile pictures to show the poster and logo which is great. I've been sending some links around and doing my bit too. Though I would always like to do more. It's just difficult to know where to start and the issue of Transplant is a very grey area. Of course some religions are aposed to it and lots of people are aposed for completely personal reasons (the thought of 'not dying whole' or 'without ones eyes' being seen as the soul by many). It therefore can be difficult to find a line between gently encouraging people to consider signing the register and seeming pushy by relentlessly tweeting and facebooking about it. It's such a personal choice and evokes a lot of emotion  - tricky stuff.

What's been being posted in aid of Transplant week :)

I was really excited to see my friend Tor Tremlett appaearing on Lorraine Kelly's breakfast show this morning. She was dead nervous but she did so well. You would never have been able to tell how scared she was. She was looking so well, great to see the change from where she was last year. In fact if it weren't for Tor's generous donor I would most likely never have been able to speak to her as we only got to speaking post transplant. Well done Tor, great work - keep it up :)

 

As for me, it's all been pretty good going for a couple of weeks. I've been a busy bee as myself and my partner are in the midst of setting up a business at the moment. This is something I would never have been brave enough to do on my own. It's all very exciting and the website will be coming soon so I will direct my readers to it for a cheeky butchers when its launched :P. We plan to sell products for cake decoration so we have been onto to stockists and all sorts. So much to sort out. We are slowly but surely getting there though. 

On a spooky note, I was at a wedding the other day.. and who was I sat next to at dinner?? A 'psychic medium'. Usually I'm sceptical to say the least and not sure whether to believe it or think it's all a load of rubbish, preying on people who are in a vulnerable emotional state etc. But... I may have been convinced!! She introduced herself and we were just chatting casually. I felt like I'd known this woman my whole life, like she was my best friend. Something I can't describe. She turned to me (whilst I had a mouthful of chicken roulade :S) and just said something that really freaked me out. She told me 'not to worry' that I would 'have another couple of really rough years but then things would seem a lot different'. And that she had 'seen my first born so I could stop worrying about whether my health would stop me having kids'. How did this woman know this!?!? She didn't know I had health problems or that I had these worries, she'd never met me before. And I had never told anyone that before. Weird. There was loads of stuff she said and I literally open mouthed, jaw on the floor shocked at how accurate this woman was. It made me feel all warm inside, like there is hope after all. I know loads of people would think I was nuts for believing it but if you knew some of the other stuff this lady told me you would also be stunned. Fingers x'd she's right.. 2 more years to go... then its all plain sailing.

Botox - sadly not in my lips or crows feet :P

Having some pre-op nebs before laryngeal botox surgery.

..

All went went. Home now. My throats a little sore and my swallow isn't quite right but this is normal and to be expected. I have this procedure done every 3 months to help my laryngospasm

All's Well that Ends Well

What a crazy month. I haven't been able to blog as I have been in hospital and they had no 3G/wifi signal whatsoever. So even when I was feeling up to it, I couldn't get online. This is super frustrating as facebook and twitter are my lifeline and save me from going completely nuts when I'm in hospital for a long time. 

This was the' standard drama' - if I can call it that. I was having some trouble with breathing for a few hours and got really tired out running around during the day which didn't help matters. Sean (my boyfriend) got home from a long day at work (sorry babes) and was greeted by my blue face. It was the night of the England match for Euro2012 too so I felt really guilty as I imagine he'd been looking forward to sitting down to watch it all day. He was keen to get me to hospital, I was more keen to wait it out. Mainly because I wanted him to see the match, and I'd promised him a Chinese take-away that night (haha, small things ay). Anyway he explained how we were better off going earlier than later as after the match A and E would be full of drunk footie fans. After he told me that I didn't take much more persuading. A and E is always horrible on a Friday, and that's when there's not football on, let alone when there's an England match being played!

We rocked up at the hospital and I must say I was feeling pretty shocking by this stage. I wasn't going to make the same mistake as last time and try and get to the waiting room in that state so I waited until Sean came back with a chair and some portable O2. I had my own O2 in the car but its such a big bottle and so impractical.  NB. I am still working on getting a small cylinder as mentioned in previous posts. But it seems yet again my loopy consultant has changed his mind. I despair I really do. 

Looking pretty blue in the car while waiting for Sean and the chair

I got in there anyway, was taken straight through to resuss and had a central line whacked straight in my neck. I know this sounds like a strange thing to say but I was actually so relieved they did that. I usually have to battle with them as they want to try and get a small vein first in the back of my hand or arm. Usually it doesnt matter how many times I tell them that I don't actually have any veins left, they  still want to have a pop at it. So you can imagine my relief when there was a respiratory reg on call who took my word for it and just got on with it. In the long run this is much more beneficial as it means I can be given the necessary meds and get back to feeling better ASAP. It wasn't long before I had the standard aminophyllin infusion and started to feel a million times better. If only they could act this fast every time. My blood gases weren't great (pO2 of 7.2 - normal range is 3-5 I think) which meant I wasn't able to exhale the CO2 and as a result it was building it up - dangerous business. So they had ITU come down and take a look at me. They took me upstaits to HDU/ITU where I had an arterial line put in (ouch!) and lots of infusions started. 

Was so pee'd off as Sean was chucked out and not allowed to bring any of my stuff in. I wasn't allowed my iPod, any wash stuff.. nothing. So I can tell you, that was one lonnnnnnnnnnnnng night of staring at the wall and hearing nothing but buzzing monitors. Plus, not long after the maintenance aminophyllin infusion was started, I began to experience the usual perfuse vomiting as a result. An anti sicknesss I take called ondanzatron is usually really effective. I can't take any other anti sickness meds as they make me sicker (I know - bit backwards ay?!) so this one has been a God send. But even this didn't work this time. So I spent the night puking my guts up until my system was loaded with it. 

Starting to feel and look a bit more like me. Complete with CVP in my neck thanks to very fast acting Reg.

Thankfully within a couple of days I was well enough to go back to a ward. Unfortunately the only bed available was on a gastric ward. The nurses seemed to have absolutely no knowledge in even the most basic of respiratory care. Not to mention, I was stuck on a ward where a respiratory doctor didn't see me, in fact I was seen by a renal team - haha - so that was useful!?! It later transpired that there had never been a handover regarding my existence on the ward and so I spent 3 days there just wasting time and not getting any better since arriving there. In fact, I felt worse and knew I was heading for a return to ITU. 

After Sean took a walk down to the Resp ward to find out what was happening about the mystery bed I was supposed to getting, one finally appeared. Strange how suddnely when you threaten to complain, a bed magically appears isn't it? So I went down there. I'd love to say that the care there was better but sadly not. They were so short staffed, there was one nurse on to every 15 patients. A woman in my bay had a really nasty gastric bug and we were all told that we couldn't have our bed linen changed for 3 days in a row as they had run out of bed sheets. And if anyone made a mess (ie. poor woman in next bed) then they would put a pillow case over it!!! OMG.. this made me gag. I couldn't believe what I was hearing.

I went down hill pretty fast on one of the days after this and found myself begging.... and I mean literally begging the nurse to get me a doctor as she seemed completely oblivious by anything going on around her. She just kept coming back and taking my observations... my Sats were 81% when I told her how bad I was feeling and she said she would go and look at my medication chart. She didnt come back for an hour! By the time she actually called a doctor they had gone down to 71% and I literally felt completely done-in. Nothing left to fight with. The doctor came straight up and advised the nurse to set up a magnesium infusion, and some aminophyllin and went to attend to another patient while she did that. Well, guess what.... this delightful 'nurse' - (I use the term lightly) didn't bother. And consequently I found myself laying there blue and unable to move waiting for a miracle. I had pretty much kissed goodbye to any help. I felt like I knew I was going to die that night. I was completely powerless. I couldn't call for help, Sean was there thankfully and stayed way past visiting times just to keep me alive. He was running about all over the place trying to get them to do their job and help me. I remember just looking at him and thinking, 'this is me... giving up.. I've got no more to give'. I remember closing my eyes and all these things going through my head. I was thinking... my God this is going to be so traumatic for him, when there's nothing he can do to help. we are totally reliant on these useless people to save my life. All he can do is sit there and watch this'. I lay there like that, in and out of consciousness until I couldn't even feel my chest move any more. And I knew... I'd stopped breathing and I couldn't take another breath no matter how much I wanted. It's then my memory just stops...dead... nothing. Nothing but blackness.

Thankfully Sean took the initiative to pull the alarm out of the wall because the nurse just stood there watching, blankly, in sheer panic I guess. Sean tells me at this stage he was really quite verbally abusive to the staff as he knew I was going to die from neglect and he was powerless to it. I say abusive, I don't think unduly. I gather he told them to 'DO THEIR F*ING JOBS AND GET A F*ING DR' as they should have 2 hours before. He had tried and there was nothing more he could do but watch. An emergency response team came, with an anaesthetist and helped breathe for me and gave me a load of infusions of I don't know what of. I just remember waking up, all blurry eyed, thinking 'What the hell has just happened?'. Not even entirely sure if I was alive or dead to be honest. 

And so another week of treatment ensued. This upset me so much. I have been through this countless times believe it or not. I am regularly neglected by health care teams as they don't realise the seriousness of my condition/don't have the staff to monitor me. I carry paperwork with me to explain, so when I am too sick, they can read it and act on it. But even that doesn't seem to impact. It seems I have to dying or dead before anyone takes action. It upset me more this time because myself and Sean were due to take a vacation to Belgium and Germany the following week. And their slow reactions and crap treatment/or lack of meant I had to endure another week in there and that ate into our holiday time. 

We talked afterwards about whether we would still go away.  Afterall  I'd been through quite an ordeal. We decided being in a foreign country where we didn't speak the language probably wasn't wise considering the seriousness of my admission and downward spiral whilst I was there. I felt like such a let down. Yet again, me being poorly had ruined the fun we were supposed to have. 

It turned out okay though... we had a change of heart after my discharge and decided it would be okay if we just took things steady. I didn't walk anywhere during the vacation, I only posed for a few photos standing up. Apart from that I was too tired and breathless to do much. We took the oxygen generator too, and the big bottle for when we were out and about (As impractical as it was). 

Posing with the giraffes at Antwerp Zoo, Belgium

By the lake for dinner in Cologne, Germany

Friendly tortoise at Antwerp Zoo, Germany

Hanging with The Count and Elmo in Gent, Belgium

Beautiful Cologne Cathedral, Germany

My Sean, in a restaurant in Gent, Belgium

We had a fab time and I felt so liberated. Over the last few years travel abroad has become so problematic for me. I can't get insurance and I get too tired to do all the sight-seeing stuff that I love to do. I felt like I was full-filling a bit of a dream really. I never got to do the student travelling thing and I'd longed to so much for so long. I really had felt like I was missing out. I am so thankful to Sean for making it happen for me. It was beautiful and I want to see so much more of it. For those few days, despite being in a wheelchair and getting some strange looks from the Flemish, I felt like almost every other person my age. I travelled through 5 countries in one day. I will definitely go back and see more of Europe. I can't wait :)

It's not all death and despair

For the last few days, I have felt pretty darn good as things go. I've been feeling quite sprightly and managed to go out and about quite a bit. Tonight I'm hoping to go to the cinema with mum for a girlie night to see Prometheus. And a kind friend gave me some Cafe Rouge vouchers that she claimed when she cashed in her Tesco points, so I'm going to treat my lovely mum :)

I wanted to also take a moment to thank all the friends I have made through twitter and online forums who for the most part also live with chronic lung conditions. You have all been such a great support to me. More than you'll ever know. Just a year ago I felt so alone with all of it but you have given me reason to believe there is hope and your input has given me just the boost I need to start looking to the future again. I shouldn't name names as I'm scared I'll leave someone off the list but to name a few, Tor Tremlett - ever my inspiration, and fast becoming a cake decorating genius, Richard - who has helped me more than he'll ever know and offered me a friendship for which I am truly grateful  (even if we did fall out over something silly), Gemma - for being an upbeat and ever optimistic friend, plus the Northern Ireland contingent - namely Lauren who incidentally has the coolest baby dogs in the world. And 'Sheffield Claire', always a shoulder to lean on - metaphorically of course as we actually haven't met yet haha. Plus our very own 'islander', Jack - keeping it real!! Luv you all - 'you da bomb'. Plus loads of others that I can't thank enough :)

Sickly sweet Oscar styly speech over for this year :) < bows>

No Port, more expense and crap art

Crazy week. Long story involved which I'm not in the right mind set to go through start to finish. But main point I should probably mention is that I had my Brompton consultation today. And surprise surprise - no Hickman, no port - no line of any kind will be entering my sub-clavian any time soon. Apparently the risk of sepsis is too high and in emergencies the staff in A and. E wouldn't know how to access it. I disagree. Clearly I don't have 15 years of medical school to back up my opinion but I do have 27 years of living in this body, with these lungs. Not to mention a fractured shin to show for the last effort that was made to gain access when I was on deaths door and there were no veins to be stabbed. perhaps in my own stupid little way I think that it more than qualifies me to disagree?!? So with that little bombshell I am truly vexed. I can't say I didn't expect it. I knew he would say no, was just hoping for a miracle I guess. 

Was also told because I'm not a CF patient I still have to buy my own (£300+) nebuliser machine. That basically says 'If you're not CF then your need isn't as great' - that is despite the fact that I have more admissions than the average CF patient?! I am not saying I am more deserving - quite the contrary. I am saying we all deserve to be treated the same and to have access to the same treatment and funding regardless of the chronic lung disease we have. 

To add to my day of just general pissed-off-ness (<made up word> before you grammar geeks jump on the 'correct term train') I had to stare at that god awful cheap, shitty, donated 'art' they have on display there. In fifteen years that excuse for 'art' has not changed. It doesn't calm me when I've waited over two hours to be seen as intended but makes me even more fractious. One day I am going to lose my nut in there and break it over my knee and then burn it in some kind of pagan ceremony. Brompton really? - come-on!!!

Neuro Physio - Hope for the future?

I went to see the neuro-physio yesterday. I have been before and I really like the lady I had. She was on my wave-length. This time they gave me someone more senior. She seemed quite cold and so I was a bit worried she'd be a bit of a slave-driver. I wasn't wrong. She really was making me work hard. She had no time for friendly conversation. Just got straight to it. She started by looking at my gait (the way I walk). 

(As any of you who know me will know I use crutches to walk these days due to a incident that happened two and a half years ago. I was in an unfamiliar hospital as I wasn't in my area when I got sick. I was therefore taken to the nearest one. I was very sick and spent 3 weeks on life support in Intensive Care there. Unfortunately due to poor care, and downright neglect effectively, I got compression on my spinal cord. As a result my nerves no longer worked as they used to. As an extra stroke of bad luck, this was around the same time as I started to develop Avascular Necrosis in my hip joint. With the both happening in unison I struggled to control my pain and walking was very difficult).

I had only walked a few steps and she asked me to come back to the physio bed. She examined me and to my surprise announced that there was no point in treating my legs, as all the problems I had were now stemming from my spine. At the time of my initial spinal cord compression, I was not given the right care. No trust would accept responsibility for the payment of my treatment and I was therefore left with no neuro-rehab. I waited for over 18 months for someone to agree. As a result, my problems have only worsened. She said eventually they will be able to begin working on retraining my legs to do what they should be, but for months yet, the work she will need to do will be totally focused on my spine. 

So despite her coming across as a bit of 'little Hitler' at first, she seemed to really know her stuff when push came to shove. She seemed so confident about her plan. I found this encouraging, as for so long now I've remained pretty hopeless as far as regaining my ability to walk unaided. I'd even began to rely more heavily on wheelchair as walking was becoming too tiring and painful to bare.

We've scheduled 3 months ahead for appointments, and there will be many more than that I'm told. I'm just excited at the prospect of walking again. I don't care if it takes ages, I just want my mobility back if I can get it. Mobility is also crucial if I want to retain any kind of lung function. Since I haven't been able to do any exercise my lung function has plummeted.

There are no promises of course, and she didn't even speculate as to whether I would ever retain any of it, but for now I feel hopeful at least.

Portable O2 and Hickman Lines

Today I went to see my respiratory consultant. He has been my doctor for over 15 years so we know each other well. I've approached him many times before regarding a portable oxygen supply. He is always so reluctant because he says if I have access to it portably, I will be reluctant to go to hospital when my breathing is bad which can be life threatening. But with my recurrent emergency admissions it seems ever more pressing an issue. 

I took Sean with me. I was worried about this as I didn't want to over-emerse him in my medical world. I want him to get to know me for me before he has to confront all that's wrong with me. But it seemed important to have him there as not only support but also so as he could tell my doctor what (in his experience) happens to my breathing when I sleep. And of course what he witnessed on the day I had to go to Resus recently. It's difficult for me to recount those events as I was largely unconscious for the majority of it. 

My doctor did listen and to my surprise immediately agreed and filled in the application to get me some portable O2 albeit only a bottle to carry rather than the re-fillable liquid supply. But I was happy for that alone. It gives me a lot more freedom to be able to travel in the knowledge that it buys me time if I am any distance from a hospital. 

Another very important thing I wanted to discuss with him was the option of a permanent port of some kind. As you may or may not have read from my previous blog posts, I have absolutely no venous access any more, thanks to years of medical intervention. He was concerned, as they always are about the risks of this getting infected. And also said he was worried about the cosmetic appearance of it. I told him straight out, I was at a  point where cosmetic factors no longer matter to me. Just to have the relief of not being stabbed multiple times with a needle would make my hospital admission so much more bearable. Alas, he agreed but my relief was short lived as he said he would have to consult the big guns at the Royal Brompton before he could formally agree to go ahead with a Hickman line. My heart sank as soon as he said that. I know the Brompton will never agree to it. I expressed this to him but he seemed not to be listening any more. Perhaps I'd filled his concentration quota for the day.

I find it all so hard. I seem to spend my week, every week, attending medical appointments. Never getting anywhere. Always fighting for what I need. Never getting it. It's pretty soul destroying. I hope if nothing else, he will at least send off the O2 request for he promised he would. He's been known on numerous occasions in the past to forget, or change his mind at the eleventh hour. My philosophy has become:

'If you don't get your hopes up too high, you don't have so far to fall when they let you down'.

Gastro Surgeons

Today I attended the dreaded gastro-surgical clinic appointment up in London. The last few times I've been have been nothing short of a nightmare. I've been pushed from pillar to post for years now as no one wants to take responsibility for performing my surgery. This is because they have so many concerns about maintaining my airway during it. This drives me nuts because its not like I don't spend loads of time going under emergency anaesthetic as it is. And (although granted I know emergency anaesthesia is life of death), they seem to be able to get a team together in quick time to sort me out then. Why will no one sort this out?

Bottom line is... I've had GERD for some years now. Which in itself isn't earth shattering stuff. But because I have the tendency to aspirate my stomach contents into my lungs - leading to pneumonia's and all sorts of nasties, I need this operation called Nissens Fundoplication. Its a procedure where they essentially create a tightening around the sphincter of the stomach so that it doesn't reflux the stomach contents up. In most 'healthy people' the sphincter does its job, unless you are a premature baby and its not developed yet, or elderly and its just lost its ability to contract. But due to lots of different reasons mine doesn't do the job it should and consequently I need the surgery - ASAP.

Today's appointment was very different. After being told my doctor had left (they forgot to tell me!?)  I had to start all over again with a new doctor. I wasn't too impressed and thought 'here we go again, may as well go home and not bother'. I had a bit of a wait in clinic but eventually was seen by a doctor who was truly the most capable doctor I've seen in this area. He was keen to listen to all my concerns and really apologetic for all the hassle they'd caused - though it really wasn't his fault. He spent ages making phone calls and made real commitments for things to be done to help my case. I felt strangely reassured. I usually don't hold out much hope for these guys because more often than not I'm let down by false promises. But he seemed really keen to make some progress with me. He is sending me for a bravo capsule examination. They've previously tried to send me for this but it has been cancelled at the last minute as yet again 'no one wants to be responsible for protecting my airway while they do the investigation. So a specialist theatre slot needs to be arranged and a different hospital. He has put the wheels into motion so lets hope things start to happen from here. The dude even gave me his email address and said if I didn't hear in 2 weeks then I should email him directly. How many doctors say that?!!?! If I can get this surgery to go ahead my life will be better by far. No reflux = no/very few, minor aspirations which means my lungs will be much happier :)

On A Positive Note - Rare for me I know!

In lighter news.... boyfriend called tonight  before he fell asleep to tell me he's fully behind me no matter what. Brought a big smile to my face as I'm always so worried and scared to get close to people incase they decide my health is too much to cope with. Meant a lot to me. xxx

Bones being drilled and Resus

Well as predicted I didn't last much longer than my last blog before the inevitable happened. My boyfriend was keen to get me into hospital so that they could check what was causing my breathing problems. I tried to argue that I was fine for some time but I wasn't going to win that fight, and in the end I relented. I managed to get to the hospital easily enough using my oxygen in the car. It was the short (20 or so step) walk from the car park to the emergency department that really caused things to deteriorate. I sometimes under estimate how ill I am and forget that the little things that I usually take for granted such as walking to the bathroom or simply brushing my teeth can be absolutely exhausting. 

Once we arrived there was a huge queue to clerk in at A and E. I had to tell Sean that I couldn't wait and he needed to tell the clerk right away that I needed help. This got me a lot of angry looks from other patients but I was too sick to care. The clerk said she'd call someone and whilst we waited for what seemed like an eternity, I could feel myself getting more and more breathless. Sean was holding my head up and kept reminded me to breathe. Finally two emergency doctors came out. I am told they saw how blue and poorly I was and so one of them and Sean carried me in. I don't remember any of this. Apparently they were ready to move another patient onto the bed in the resuss room but when they came in with me, there was a mass panic. I am so glad sometimes that I don't remember these things.

The doctors had to breathe for me with a bag and struggled to get an IV in to give me adrenalin to keep my heart going. Unfortunately after years of repeated hospital admissions I have little to no accessible veins now. Usually this would mean I end up with a central line but this time I woke to find they were using a drill to bevel into my tibia and through to my bone marrow to draw blood and give medication directly into the bone. This is a last resort, usually used in babies and is only used in resuscitation situations (intraosseous infusion). I don't remember much but remember being awoken by an indescribable pain. It wasn't like anything I  could have imagined, like something I wouldn't think it possible to feel. I had 8 doctors hold me down whilst I screamed. 

My PCO2 was really high which means I was dangerously ill, I was retaining carbon dioxide as my lungs weren't letting me get rid of it. This is what made me so blue and ill. 

I waited a long time to speak to doctor as once they had stabilised me they went onto other cases. This left me quite distressed as such a big thing had just happened to me and there was no one to reassure me or even explain what was happening.

I am really upset that I have had to have this pin drilled into my bone. I have been talking to my respiratory team for years now about how I need a port so as I don't have these difficulties with getting access to veins. Now this has happened it feels even more crucial. I cant help feeling I wont get anywhere when I ask again though.

I had a further turn for the worse whilst I was on the ward. My lungs got really constricted and I had to be given IV meds and high levels of oxygen, nebs and lots of help from the ITU team. I was adamant I didn't want to go up there as they aren't the nicest team of people. I put this down to them dealing with unconscious people all day who aren't able to answer back.

I think I have officially terrified the new partner I'm with. As my dad says, 'now he's been through the 'Gemma initiation', it can only get better from here'. So I hope that's right and that's the worst he'll see, at least for a while.

Looking like this is never a good sign

Holding off on going to A and E and have big plans this week a really need a break.

I think my lips have different ideas, I'm turning bluer by the hour so I guess at some point I'll have to give in :(

Lungs interefering with a date - Not a great start

Well what do y'know.... I am writing this as I have just spent a night in resuss with breathing problems. This is a very common occurrence for me. Less common is the passing out that came with it. I was with a guy I have just starting seeing when it happened so it was totally soul destroying to have him see that so soon in the relationship. I was hoping I'd have a couple of months to gently tell him about the complications I have but it seems fate had other ideas! As you would expect, he panicked and called 999. Que - ambulance arrives at 1am and they too panic. I was very blue and really struggling with my breathing so it's understandable. I had been feeling pretty bad since physio that afternoon. The PT did percussion on me, they do it a lot harder than I am used to. This is great for moving secretions but when you have naff lungs it makes them susceptible to collapse and I figured this was what had happened. It wasn't too bad at first, just uncomfortable, but as the evening progressed things got worse. And as is standard for me, I just ignored it, trying to delay the inevitable trip to hospital to get it sorted. I, like most people with chronic health problems tend to leave it until the very last moment as hospital is not a great option for me. I spend more than enough time there as it is, stuck on trolleys in A and E and then on a ward or ITU for weeks on end, so I try to put it off if I can. More often than not this only makes for more problems.

I arrived in Resuss and they were pretty clueless. I was in no state (as is standard for me) to tell them what my condition was or what medication I take, which specialist I see etc. So they were working kind of blind. But the blind panic they so often display doesn't do wonders for anyone with me who is less familiar with the condition. The guy I've been seeing was pretty freaked out by it all. Not exactly a turn on, seeing a girl half dead and blue.


I had my x-ray and gases taken. My x ray never looks too bad, my CT is a different story however. So the doctors hysteria was somewhat quelled when they thought the x ray wasn't too bad. My gases were a big worry for them, but I know what's normal for me and I just wanted to go home. I was totally pissed off that my lungs had decided to play up when I was on a date and just wanted to bury my head in my pillow at home. So I took my own discharge - I know, most people think that's crazy and asking for trouble but I spend a lot of time in these places and really just wanted to get out.


I feel I have so much to get done at the moment, so much so that I don't have time to acknowledge my health. I want it to bugger off - just for a few weeks. Just so I can get some stuff under way. I am meant to be going on a course soon and being in hospital will ruin my chances of going on that. Also I have cake orders to fill for the business I am try to grow (slow as it is) and I promised I would go with mum to the West End next week to see Ghost (a gift I bought her for mothers day). Just so fed up of always being the cause of things being cancelled or rearranged. For once I want everyone to get what they want, just as planned, without my lungs throwing a spanner in the works.