Friday, 17 October 2014

Be Somebody?

It's been so long since I wrote here yet it amazes me how many people still read my ramblings. When I first started writing I did it to find others like me and help along the way wherever I could. I really can't believe how much it has changed my life.

I was never the brightest kid in school, nor the funniest, I hid away in groups and quite honestly people rarely remembered me at all. Probably because I never wanted to be noticed, didn't want to stand out too much. My teachers always said I had potential but I rarely reached it! Not because I was naughty… simply because I didn't have the courage to make myself heard.

The last few years of living with a chronic illness has been a huge learning curve and I've had to do a lot of soul searching.  During that time Ive realised that all my life I felt like an "underachiever" for lack of a better word. Always feeling that I had let others down and in turn let myself down the most. Maybe it stems from my absent father, or my old fashioned upbringing where children were to be seen and not heard. Who knows! What I do know is, I had a strong will to please others, even if it made me unhappy. I thought that it was important to "be" somebody one day… you know, have a job where you could say, "This is who I am and I'm passionate about what I do!"

I found my "be somebody" job in nursing, I can honestly say I loved my time as a carer, I realised for the first time that I may not have the most glamourous job in the world but what I did made a difference… even if I was forgotten five minutes later! My close colleagues knew me well but something was missing. Simply by nature of being shy and trying to fade into the background it made me look young and inexperienced, regardless of how much knowledge or understanding I had in my head. If I couldn't stand up for myself I couldn't do it for anyone else!

So I decided to make a change, I started by changing my appearance as many girls do, I cut my hair short and dyed it the brightest shade of red I could get and instantly I changed from who? To me, in less than 24hrs. I found relatives were taking me more seriously and staff popping in from other wards actually remembered me for a change! It was like my life had finally started to mean something. I was no longer searching for myself and knew exactly who I was and where my life was going… I was going to make it happen!

Changing my look may have been what set the ball rolling but actually, it had nothing to do with my image and everything to do with my outlook. I found a whole new respect among my peers and eventually felt that for once I could actually be the "somebody" I was always told I should be.

I enrolled in university (somewhere the other people go!), it was a BIG deal to me and the proudest moment of my life (other than my children) being able to say I was bright enough to be allowed through the door!

Somewhere in the middle things started to change, as I learnt more about people, more about life, the more I found that "being somebody" was not what I wanted at all. The world doesn't really care who you are, you are one of billions of others bumbling around worrying about the same old stuff. What really matters is what you do!

I was placed in several controversial situations where I was called upon to advocate for my patients, mainly because they had the same feeling of vulnerability I had felt when I was a "who?" People in vulnerable situations find it so incredibly hard to stand up for what they really want, take a lawyer or even a Dr for example and make them strip down naked to be washed by a young woman and I can assure you, it won't matter who you are or what you do… you just want to be invisible.

 I learnt so much about life doing the job I loved and the most important thing I carry with me now is that I don't mind if people forget me as long as they remember what I did, you don't need a face or even a name but if you do something positive for someone else, they rarely forget!

Tuesday, 26 August 2014

How Do You Feel?

Probably the worst question in the world…or is it?

It's probing and intrusive and commonly people don't really want to know unless the answer is positive. Those who choose to answer in a negative context will often be left wishing they had just said, "I'm ok thanks". Gradually over time you find yourself saying your fine when quite clearly you're not.

Why is that so? What is it about discussing how we feel, that makes everyone so uncomfortable? I'm not apportioning blame on anyone, we all do it, even if we don't intend to. Is it a "british thing" or is it the same in every culture? I say this because my brother used to have a friend who's parents always asked him what his bowel habits were like as it was their culture to do so. Of course he found this pretty weird at first but clearly it is similar to asking "how do you feel" and is similarly intrusive to people unfamiliar with the culture.

What is it that makes us not want to answer the question? Is it embarassment, fear of rejection or is it just too complicated sometimes?

We are all guilty of editing our lives to give the impression of the happy marriage, the brightest child, the best car or the perfect body etc, but why? No one has a perfect life, we all face struggles that we wish we didn't have, and we are all going through the same things, only we choose to do it alone!

Why not share our experiences, listen to others and take time to fully answer the question? Surely it's got to be better than feeding the vicious circle of false perspectives and warped ideology.

So, I challenge you all to ask one person you know how they actually feel and LISTEN to what they say. You may be surprised by the response you get. Maybe that person will feel less alone. Maybe if we were all a little more honest and give a little more of our time we would all feel much less alone x

P.S. I'm feeling hopeful xxxx

Monday, 16 June 2014

Wonder Woman

I know I haven't posted in a while but I have been so busy trying to be wonder woman I really haven't had the energy left for it. That sounds really exciting but in all honesty wearing a pair of spandex pants is probably the closest I'm ever going to get!… Not that I actually own any spandex either, just to be clear ; )

So what have I been doing?

Well, following on from part 1,2,3,4,……blaughgghghgugh I decided not to write part 5! I have a half finished version of it but I don't intend to post it. So much has happened since then that I just don't want to look back. I could list the catastrophe's in bullet points for you but that's not really me and I won't let any of this define who I am as a person!

It may not define who I am but it is always going to be a big part of my life, and for that reason I've had to re-build life around it rather than brush it under the carpet. I don't always get it right and there are so many days when I still wish it wasn't me but I don't allow myself to think that way too often… I have learnt that even when you think there could be no "worse" it is still possible so you just have to make the best of what you've got.

I guess that's a lesson many people don't ever have to learn and, as a result…they let life pass them by. Everyone needs a purpose and mine kind of found me, it's funny how things work out. I could have spent my whole life never really being happy, because I didn't know what sadness was, not truly. Of course I still wish it hadn't been me, but I am thankful for the lessons I've learned along the way and the friends Ive met who get me through the day.

I don't ever achieve very much in a single day, but put all those days together and it's surprising how it mounts up. Four and a half years has felt like an eternity, but I'm still breathing… perhaps that is enough to warrant the spandex pants?

4 years:

55,000 page views
1 UK support Group- 430 people joined so far
£5000+ raised for research
Thousands more aware
2 blogs
One website….nearly there!

….and the BEST friends I could ever wish for! That's got to be something to be thankful for xxxxx


Wednesday, 26 February 2014

…I might as well write a book…Part 4

… Finally I arrived in Leeds, I felt like I could stop stressing out over the whole thing and just ride the course and let them take care of me without all the drama.

My ambitions of going home some time soon were quashed when they told me the list for new lines was two weeks long and I would have to stay with them while I waited. It wasn't ideal but there wasn't much choice in the matter. This meant I would need a temporary line once the infection was clear, just as a bridge until I could get a slot on the list for my hickman.

Several days later my bloods were clear and it was full steam ahead with placing a midline so I could get some food again! I never gave the procedure a second thought until they told me they placed them with a local anaesthetic…. great! This time I didn't need to explain, I didn't think it would be too painful so I just asked them to go ahead without it. My PN nurse who was going to be placing it was a little apprehensive about doing it without, but what choice was there really? So we just got on with it, hubby was next to me but he kind of sat back, shut his eyes and pretended he wasn't there lol. It wasn't nice but it didn't take too long with the help of the ultrasound and all three of us breathed a sigh of relief once it was done!

They started my TPN that evening. Whenever you have a gap in feeding (more than 3 days) you have to go through a kind of weening process. You start off slowly over 24hrs and then gradually build back up to a full feed over a few days. To begin with, it was all going fine but as they started increasing the drip rate I noticed my arm was starting to ache. We all thought that it was just sore because it was a smaller vein and the feed rate was putting extra pressure on it.

Over the next few days, it got more and more painful but there was no swelling or redness to see so they carried on using it. Not long after that, I noticed that I couldn't lift my arm properly and I was getting pins and needles. I told the nurse but she had a quick look and said it looked fine. Later that evening I couldn't ignore it any longer, it was so painful I couldn't bear it any longer and told the nurse she was going to have to remove it because something simply wasn't right!

The next morning the ward round dr took a look and requested an ultrasound to check for a DVT (deep vein thrombosis /  blood clot). They checked my whole arm and found a large clot running through two veins right from my armpit to my elbow. The radiographer said it was the biggest she had seen… now, I'm no radiographer, but even I could pick it all out on the monitor!

Obviously this meant I would have to start taking warfarin and blood thinning injections for the next 6 months to try and dissolve it so they started treatment that evening. I didn't give it a second thought at the time but the following day… my theatre slot comes up for my new hickman.

I was taken down to the unit expecting the surgeon to know everything about my anaesthetic history etc but I found myself once again having to explain why locals and sedation were no good. I told them it was because of the EDS and he started a long debate with the anaesthetist about it. The surgeon was a little arrogant and was kind of teasing him into explaining but he had to admit that he had never come across it before. I felt a little like they were taking the piss to be honest which didn't fill me full of confidence so a sat up and told him exactly why my body won't uptake the local and if he wanted to know more to look at the EDNF website! Realising that in this instance they didn't actually know what they were talking about, they apologised and agreed to giving me the GA that had been requested.

People wonder why we get so frustrated. Would you like to have to beg for the right care? Would you like to have to carry a medical encyclopedia around in your head so that dr's don't just see you as being "difficult"? Would you like people to think you are a drug seeker? I'm guessing NOT! Well, we have to face this, day in day out year after year, and I can tell you…. it just gets harder the longer it goes on!

ok, rant over…

Once I had the line placed I knew I would be able to go home so of course all I wanted was to get out of there asap! I had a lot of swelling but it was expected because of the warfarin so I didn't think too much of it and got myself off home as soon as the papers were signed!

…………… and then……….

I went straight to bed, did not pass GO and did not collect the £200… Honestly, I was good this time!

I've learnt from past experience that the first few days at home are tough, you feel ok in hospital because you are laying in bed RESTING all the time but as soon as you get home it's like….ooh that washing needs doing, and, that doesn't live there, and, mummy I need a drink! But I didn't do any of that this time I swear! Mainly because I couldn't move my arms but hey, that's beside the point!

I slept for most of the following day so I didn't notice that my line had started bleeding. When I finally woke up I looked down to find a big red bulge under the dressing. I wasn't sure what to do so I rang the PN team in Leeds who said it was probably just bleeding because of the warfarin and not to worry, just change the dressing and keep an eye on it. I put the phone down and got everything out to change it… and then  realised that I couldn't actually manage to do it by myself with one duff arm and a swollen chest so I booked a slot with the nurse at my local practice.

Well, she took one look and started flapping. I got that sudden sinking feeling… here we go again! I assured her I had spoken to the hospital and they had told me to change the stat lock and dressing and I could talk her through it. She was far from happy about it but agreed to give it a go. However, as soon as she peeled the dressing away we could both see that it was actually still bleeding. If she wasn't happy before… she certainly wasn't now! So she promptly left the room to speak to the Dr and came back 5 minutes later with a thermometer and the "look". I crossed my fingers and toes as she took my temp and insisted, I was fine,  I didn't feel unwell, and would be ok if she just put some gauze on the dressing…. beep…beep…beep….38.2…..arrrhhh Bkjbgegilwa!

….. part 5 coming soon….

Friday, 14 February 2014

…and still we're catching up!.. part 3

…. I know, it's been a long story, but it's not finished yet and I have so much more to tell you already!

So, to re-cap, I had line sepsis… They removed my line in the most painful manner known to man… and then I was told they needn't have removed it at all.

You would think that would be enough for one person in one admission but the punches kept on rolling and I simply had to take charge of the situation before it got any further out of hand.

I spoke to the consultant who had been assigned to me and insisted they speak to Leeds before making any further decisions and pleaded with them to try and get me transferred. He agreed to make every effort to contact them and get advice so I presumed he would be ringing them asap. He then went on to say that if bed availability was going to be a problem they would have to start feeding me some how.

Later that day the registrar came to tell me they were planning on placing a femoral line and they were trying to make arrangements to have it done in the early evening. I was still on antibiotics and had simply presumed they weren't going to try anything until the infection had gone. Alarm bells started ringing instantly so I asked if they had got the ok from Leeds to do this. He explained that they hadn't heard from Leeds and nutrition was the most important thing. I was puzzled as to why they were finding it so hard to get in touch with anyone as there is always someone at the end of the phone to pass on urgent information. His reply was, that they had emailed my consultant… very 21st century for the NHS but what's wrong with a two minute phone call? It probably took longer to compose the message!

Knowing that my GI wouldn't actually get the email until the end of her working day I decided to ring the PN team myself and get advice. 5 minutes later I had made more progress than any of the Dr's looking after me. I spoke to my PN nurse and he explained very clearly that I must NOT let them place another line, IV fluids through a peripheral cannula were perfectly adequate and placing a new central line could cause recurrent sepsis.

Not wishing to EVER feel like that again I thought it best to discuss the problem with the team looking after me. One of the younger doctors came to sign through consent forms for the new line so I told him I needed to speak to the registrar before signing anything because I was getting contradictory advise from my team. He was very young and obviously lacking in experience so I laid everything out as clearly as possible. I was trying to be gentle and not rock the boat too much… and then he muttered those fateful words… "I'll tell them you're refusing then".

OH OOOOOOH! I rarely loose my temper, I hate confrontation with a passion and avoid it if ever I can. However, that one little sentence was like a red rag to a bull. I'm incredibly sensitive about the subject of "refusing treatment" and felt that the connotation of those words were unjust! I was NOT refusing treatment, I was following advice from the experts…. who I know and trust with my life!
It wasn't pretty, I'm not proud of myself, I just couldn't take any more! He was not expecting such an onslaught of verbal diarrhoea and left the room vowing to never use the term "refusing" again!

Obviously, it all ended with half a dozen people coming to try and resolve the situation, so I simply told it how it was. Leeds want to wait for negative cultures before any new lines are placed so that's how it's going down! I spent 2 years under their care at the beginning, in which time they watched me almost starve to death, but now I have a diagnosis 4 days is too long??? Am I the only one who sees the irony in that?

…. strangely enough, I was transferred the following day… ; )

Part 4…. yes part 4, coming soon!

Tuesday, 28 January 2014

Long update part 2

I spent the night on one of the orthopaedic wards and then moved to the very ward where all this started back in 2010.

Of course, this put me on edge from day one, however, I was pleased to see one of my friends was now sister! She was the only one who stuck up for me last time when they were flinging around the anorexia  accusations so that put me at ease for a while.

My blood results confirmed line sepsis and they wanted to remove my line. I asked them if I could transfer to Leeds so my own team could decide. Of course, it was the weekend so they were dealing with a bed manager and had no access to my team. They said they could sometimes save the line but I had Staph Aureus and it had to come out as soon as possible.

When they said that, I didn't expect them to remove it straight away since it's grafted in and I would need a general anaesthetic. 5 minutes later, in comes a nurse, with a trolley…. Oh my goodness…she told me she had come to remove my line! I asked how she intended to do that and she said she was just going to pull it out gently. AAAAARRRGGGGH! I sat and explained that it was grafted in and would need to be cut loose under anaesthetic.

Monday comes round and I still have my line and was hoping someone would finally speak to my team and at least ask for advice. During ward round they assured me they would get in touch and try to hurry the transfer so I could be put on the list for a new line. Later that day a young surgeon came in and told me they would be removing my line in theatre under local anaesthetic (quietly screaming inside). Once again I found myself having to justify my issues with locals, and again I got the usual response, "are you sure it doesn't work at all"…. YES!!!!! So he offers me sedation with the local….again AAAARRRGGGHHH! Sedation normally makes you drowsy, you still feel pain, and for me…it wears off very quickly.

After a long debate and a massive disapproving sigh he agreed to arrange the general, simply to get me to agree to have it done. It was glaringly obvious that he didn't think such a small procedure warranted a GA. Looking back now, I should have just told them not to do anything and wait till leeds had space for me, but hindsight is a wonderful thing! It was late afternoon when I finally got called to theatre and my mum had arrived to visit so she waited I'm my room.

When I got into the department I was met by an anaesthetist and the surgeon I had spoken to earlier. He didn't say much and left the consent form for the anaesthetist to deal with. She handed me the form and speedily read through it for me…. I was astounded to see I was expected to consent for the sedation and not the GA. I immediately raised the issue with her and explained that he had promised a GA. To which she told me that she would make sure I was properly sedated throughout and I wouldn't feel it. I had a really bad feeling but in that situation, when everyone is waiting for you and everything is set out, I didn't feel like I could refuse. So against my better judgement I agreed.

What a disaster that was! As per usual, they gave me a standard 2mg dose of midazolam, gave the local and started the procedure…5 minutes later, I'm practically jumping off the trolley as he tries to cut the line free. They all panicked, told me they had started so they had to finish and gave me more midazolam. This time I awoke to a great big yank on the line… there were two grafting cuffs on my line and he had presumed there would only be one, so he was trying to pull it out and wondering why it wouldn't budge! Needless to say, I was NOT impressed!

How are you supposed to carry on trusting these strangers to take care of you when you know full well they don't listen to your concerns and take them seriously. I was bullied into that procedure and it resulted in unnecessary pain and distress.

On my return to the ward, I was greeted by my mum. She told me my phone had rung 10 minutes after I had gone to theatre, she had answered it for me knowing it could be important. It was my GI in leeds… she had rung to tell me NOT to let them remove the line!!!



To be continued… Yes, sadly there's a whole lot more to follow! keep an eye out for part 3 x

Wednesday, 15 January 2014

Long update part 1

…Following on from my last post….better late than never!

After going over my last entry I can see that something was ready to give, and unfortunately…it did. As usual I did it in style and managed to end up with a string of battles to wade through both mentally and physically. I'm naming it the boomerang effect because it doesn't matter how far, or how many times I try and throw this off it always comes back and smacks me "upside the head!"

Bearing in mind that it's been several months since I last posted, I'm playing catch up with this one so forgive me if its a bit sketchy. I have so much to say that I don't think this post is going to make a great deal of sense unless I spend the next few days trying to organise my chain of thought. So, I'm just going to babble and hope for the best!

I was diddling along in my own little way, good days, bad days, you know the drill!

Then BANG something else comes along and undoes all the hard work I've put in to my emotional understanding of all this.

I think it's fair to say that I have a few minor trust issues when it comes to drs but I'm working on it. I found people I did trust to take the reigns so that I didn't feel like I always had to find the solution for myself.Two years ago, I made my hubby drive me 2hrs up to Durham in the middle of the night screaming in agony the whole way...why? Because I didn't trust my local A and E to take care of me!

I've come a long way since that night, I learnt to trust again and for the first time in years I felt safe. I had a plan, and a great support network... So much so that I felt I could stop worrying and get on with living with how things are. I switched gp's within my practice and it was the best thing I ever did. I feel like she is there for me and understands that if I phone it's because it's important... Not because I have some weird obsession for sitting in crowded waiting rooms!

So in many ways, things have changed for the better and I'm grateful for all the help and support I get.

However... Yes there's always a "but"....

I had reason to test my new found trust recently, it didn't go well and now I feel like I'm back at square one, wondering if I took my eye off the ball and let my guard down too much.

The "bang" moment was a night from hell. I was fine one minute, and the next I was on my way to the nearest A and E with severe abdo pain. I trusted that my local hospital would be ok since this was an acute problem and not related to my normal symptoms.

What happened next is beyond my comprehension.... After running a couple of basic tests they told me it was probably the start of an obstruction. The surgical reg went away to arrange admission for further investigation and came back to say...

We can't admit you because we can't administer TPN on the wards and you can't self administer because no one here is trained to use a Hickman line! We would have to put you on ITU and place a CVC line!


At that moment I lost my faith all over again. I told him that I wasn't going to stay under those terms because the whole thing was just ludicrous. What happened to non-malificence? This is where words fail me!

If they were suggesting unnecessary and dangerous procedures based on a minor training issue, then I think I'm safer caring for myself thank you very much! It doesn't stop there though, after telling them I would be going home they attempted to prescribe a few meds to cover me over the weekend until I could speak to my own team. So they offered me Octreotide for my "obstruction" and Naproxen for pain. They had all my notes, I made sure of that, so why were they trying to give me drugs like octreotide without even checking if there actually was an obstruction or not?  As for the naproxen, I hadn't had it before but they told me it was an anti inflammatory drug which needs to be taken with food? HELLO!!! I politely reminded them that this might be somewhat of a problem for someone who can't eat! Anyhow, they said if I put it through the jej tube it would be absolutely fine, so rather than be"awkward" I just agreed to take what they were offering so I could get out of there.

It was a rough weekend to say the least, of course I was more than sceptical about taking the new pills because there was no way on earth I wanted to feel any worse than I did already. However, when you have that much pain and have nothing else to ease it, you tend to just say f#@*  it I don't care if it kills me I will try anything!

Monday eventually came round and I finally get to speak to someone sensible! I arranged to go through to leeds the following day for blood tests and a consult. My GI debated all kinds of ideas as to the cause of it all, including the possibility of a gall stone. She decided to wait for my bloods to come back before deciding what to do.

I got a call the following day to say that my ALT's had elevated from 37 on Friday to 363 on the Tuesday. She asked me to arrange for my GP to repeat them on Friday to see if they were any better. They were much the same, no better, no worse but not right. She decided that since things were much the same it wasn't worth having the radiation needed to investigate. She asked me if I had been taking any different meds since friday. Of course the only new thing was the Naproxen, even though I had only had a couple of them before giving up on them because they didn't help. So the whole scenario was kind of written off as a really bad day made worse by the "help" of my local hospital... cheers guys! I asked my GI what she would suggest I do to avoid things like this happening in the future and she said, "don't go to that hospital."

...but it doesn't stop there....

This is where the confusion kicks in! In the midst of all this I had arranged an urgent appointment with my other GI since Leeds wanted a further opinion (i.e, what shall we do with this one?)

By the time I got over to see him I was feeling pretty rough. I was fairly confused by the whole thing and really just needed to curl up in a ball and shut the world out. Probably not the best day to be stirring up an emotive subject!

Anyhow, I tried to explain the whole scenario as best I could. Maybe not well enough, I'm not sure but something didn't communicate right because I left even more confused than I was before, and burst into floods of tears on the way out. This isn't like me at all, I just got so overwhelmed by the endless questions and never finding the solution.

The outcome was a recommendation of an MRI scan to rule out possible residual gallstones and a referral to the autonomic specialist that had been overlooked in the midst of everything. He was also keen that I try not to let my experiences at the local hospital prevent me going back in the future since it is the nearest hospital in times like that. I was still sceptical but agreed not to judge too harshly. I fully understand that this is a complicated issue made more so by the fact that so many different drs and hospital trusts are involved. However, at what point do you say enough is enough? I'm so tired of explaining over and over to new faces who are simply "passing through" my care, never fully understanding the how's, the why's or the impact this has on my whole world.

As you can probably gather, I really wasn't having the best time of it and one thing soon led to another. I can only presume that the added stress, fatigue and lack of sleep contributed to what happened next.

Once again, I started to feel unwell, but this time it was different. I started with a temperature in the early evening but passed it off as the start of a cold which had been doing the rounds with the kids. Obviously I know I need to be vigilant when it comes to temperatures so I rang the nurse on call for tpn. She told me to disconnect the feed but not to flush the line and go and get my bloods done to be on the safe side.  I flushed some paracetamol through my jej tube and set off to… the nearest hospital (yes I thought they could handle a blood test). I took my little thermometer with me so I could keep an eye on my temp if I had to wait a little while.

By the time I got there, my temperature had come down a little but I felt terrible. I explained what the problem was but I had a feeling it wasn't seen as urgent after going through triage with a temp of 37.5 which isn't considered a temperature at all these days, 38 is the marker and so I sat in the waiting room for a further 2 & 1/2 hours. I was so cold I had curled up in a ball next to hubby shaking like I was sat in a freezer. Every muscle in my body was aching and I was starting to wish we had just gone the extra distance to leeds.

When I finally got called through once again, it was pretty clear I was going to have to tell them what to look for as they didn't seem to be taking any of this seriously. I told them I had a central line and a temperature and needed bloods doing to check for line sepsis. His response astounded me. He said, "I can't see it being a line infection because it is very difficult for bugs to get inside the line!????" To which I politely explained (while screaming on the inside) that line sepsis is one of the most common complications for someone with a central line. I then told him (since they hadn't checked) that my temperature may have been ok on arrival but it was now 40.5 after paracetamol indicating a significant infection! This prompted a much more favourable response and they finally took some cultures and got me started on antibiotics.

I think that night was one of the longest in history and by morning I felt like I'd been hit by a truck and the driver had turned round for a second go just for good measure. Not the ideal time to have to explain my medical history to a bunch of strangers, but you're on your own in times like these and the only person who knows what you need…is you. It sounds awfully pig headed to say that at this point but the rest of this story will hopefully explain where my feelings come from.

to be continued…..