Monday, 4 September 2017

When You Have To Be Your Own Advocate...

Welcome, friends!

So, I've been MIA and thought I'd explain why... I meant to blog at the middle/end of last week but circumstances dictated otherwise in my life and I just felt completely demotivated and despondent as a result. To speed up this process, I've embedded my post from Instagram last Thursday (31st August) below.

#thursdaymotivation ☆ "You're much stronger than you think you are. Trust me." - Superman. #quotestoliveby ☆ This #quote spoke to me today as I phoned the Drs for my blood results & didn't get the answers I was hoping for (although after two decades of dealing with #chronicillness I should've expected nothing less). Today has been a day that has tested me emotionally & mentally as it sent me back to each time that I've stood at the end of the phone to be told the same thing. I've cried & felt completely numb, indifferent & despondent in one day. Only this time something different sparked within me - this time I felt angry as I have more experience & inner strength than ever before. Why?! ➡️ I'm only in my 30s but I've dealt with this for two decades, since my teens - I now have a family to look after & dreams that I'd still like to fulfill. This time I won't be fobbed off unlike the other times where I was too weak to deal with it, then end up bedridden like before. This time I'm going to fight! 💪 And the silver lining? There is one! ➡️ Despite how I've felt today, this has made me even more determined to continue to advocate for #chronicillnesswarriors & the #holisticnurse / coach path that I decided to pursue - to stand up for patients & for the appalling lack of follow-up/recovery care for people with long-term conditions. #spooniewarriors unite!! #nevergiveup #yougotthis #ibelieveinyou #ibelieveinme #sharethelove 💖💜💛💚💙
A post shared by LifeOfDana (@hearty_habits) on

Honestly, living with chronic illness can be so frustrating at times and I really feel so hurt and quite frankly, completely demoralized, by the way in which I have been treated by our National Health Service (NHS) that I don't even know how to start to convey this to you. So, to catch you up with where I currently stand I also recommend reading my first post on the blog as well as my Instagram post above.

Here's my story (in brief) of what I have had to deal with from diagnosis to the current day and hopefully this will show why I feel the way I am currently feeling (I'm also using it as a template for what I would like to pass onto my current health care provider):

Mid/late 1999: 
I grew weaker and weaker by the day for no obvious reason and my blood results always came back as being within the 'normal range', apart from Anaemia which I was diagnosed with, but I knew that it was more than that as I was slowly losing my cognition and ability to function on a daily basis. I went through a multitude of possible diagnosis's including Leukemia, Multiple Sclerosis (MS) and 'grade A perfectionist' - yes, seriously. I also met with two consultants during that time - one who voiced that she 'did not want to go near me and would appreciate if I left her room ASAP' as I was recovering from a gastrointestinal infection and she prescribed tea and biscuits because that's apparently how she got herself through medical school. Yes, seriously. (My advice to her would be to seek out her own nutritionist for future reference - there isn't, to the best of my knowledge, much nutrition in a rich-tea biscuit). The other consultant was adamant that it was MS and when he found out that it wasn't, he prescribed stir-fries as a daily meal. Yes. You read that right, again. (I have no advice for him, as he is clearly an idiot).

Late 1999:
By this point, I was completely bedridden and had lost the ability to walk, talk (my speech became slurred and eventually the words no longer came out of my mouth - when they did I sounded like a drunk person) and my mother had to give me bed baths and feed me. I was only sixteen years old and had missed a good portion of my main year at high school. I did try to keep up with the work as best as I could but eventually I had to give up because I simply wasn't able to read, write or think. 

After months of Doctor's not being able to figure out what was wrong with me I finally met a Doctor who diagnosed me with Hypothyroidism. However by that point, I was Myxoedemic, completely bedridden, my main body organs were starting to shut down and I was slipping into a coma with an estimated timeframe of three months to live. The root cause of my myxoedema was delayed prognosis. Who knows how long I'd had the disease, it could've been present since birth/childhood as they never tested babies for thyroid disease in those days with the foot prick test like they do now. Either way, I was at a point where I was gravely ill and had lost the ability to walk, talk, eat and take care of myself.

Early 2000:
After six months or so of treatment, I had recuperated enough (with regards to the basic activities of daily living) to leave the house and return to school, however, I had missed so much that I returned as an adult learner. Even after everything I'd been through I was determined to sit my exams but attending school took everything that I had out of me. I also lost friends during that time because they simply 'moved on' and looking back they probably didn't know what to say. I get it though, life is tough for teenagers as a general rule. We were young and I was the odd one out, I guess. I also was not the same person that I was at the start of my journey and I couldn't go back to being that person again when I'd stared death in the face.

By 2002 I'd spent two years fully recuperating and I packed my bags and left my Island hometown and traveled to Glasgow on the Scottish mainland to study Social Sciences at college. I still wasn't in the best of health but I was determined to leave the island that I lived on as it housed so many bad memories for me. I worked as an auxiliary nurse and support worker during that time and returned home to work in 2004, however, I went back to mainland Scotland to study adult nursing in 2006. In 2009 I gave birth to my little girl - the pregnancy was fine (in fact I've never been so well monitored). The years 2002-2009 were great - lots of fun, partying, being a student, working etc and I felt good on the whole. The odd bad flare day but nothing that I couldn't cope with.

My hormones were in shreds after having my daughter. I didn't have time to let myself heal though, I had to return to work when she was only six weeks old as we needed the money - I was working twelve hour shifts (well, on paper - we all know they're about fourteen - fifteen hours in reality!) with acutely ill people on a hospital ward - I was working beyond my own ability health-wise though.

Early 2010 I received a call from a locum Doctor (never heard of him in my life) and he told me point blank that my recent thyroid blood results had come back normal and he was taking me off my medication. I couldn't believe what I was hearing and stated that of course, they were normal - that was a good thing... if they had been abnormal then it would have meant increasing or decreasing my meds. I told him in no unnecessary terms that I had a baby to look after and a full-time heavy job to hold down and there was no way in hell that I was going back to the state that I'd been in eleven years previous - I couldn't do that to my little girl, my husband or to myself. However, he clearly couldn't give a toss (as he stated that wasn't his concern, that I was being silly and that the numbers spoke for themselves) and then he hung up the phone on me. 

I was getting married a few months later and needed to work so I ignored him and continued to take my medication (our local pharmacy often hands out two or three packs of medication over the Christmas/New Year holiday and I had a year's worth left to take in my cabinet so I wasn't too worried). In hindsight, I should have followed it up/put in a complaint but I was busy - being a new mum, getting married and working all hours for the NHS - looking after other people whilst the NHS was busy failing me! So, I managed to walk down the aisle and had a grand old time but eventually, I ran out of medication and when I went to order my prescription... surprise, surprise... it had been canceled. So I booked a blood test and it came back normal (of course it would as I had BEEN ON MEDICATION), but no more meds for me. A computer apparently said no. (Not the Doctors inability to interpret the results pathophysiologically or to look at the bigger prognostic picture then...?!)

Sidenote: when I was first diagnosed in 1999 and was told that I'd have to take meds for life, I would've done anything to come off of them, I dreamed of being told that I was normal! So I thought that it must all be in my head and that I'd just get over it and on with it and so that's what I did.

And so it began...

I started to feel weaker and weaker (it crept up on me slowly) - I never realised how ill I was getting - I honestly thought that I was just getting worse due to the exhaustion of being a mum with a new child and working in a busy surgical ward at the time (which also dealt with day-surgery and high-dependency patients), plus we had a lot of extra familial stress going on at that time so I put a lot of it down to that. I never saw my symptoms for what they were and neither did my family as they were all caught up in the extended familial issues that surrounded us too. Well, a year later I was so ill that I had to quit my job which affected us financially and we moved in with my parents because as well as being financially strained, I was also unable to look after myself and my (by then) one and a half year old at that point. But nobody at the health centre seemed to care, I was 'fine'.

Late 2011 
On my way to being completely bedridden again, my mother phoned the health centre on my behalf demanding to speak to somebody, got an appointment the next day and literally carried me into the surgery herself - I was barely able to sit upright in the waiting room area, keep my eyes open, speak or walk. The Doctor that seen me was flabbergasted at what I told him. He said that no-one in their right minds would take a long-term condition patient off their meds just like that, with no follow-up. Well, I said, 'he did' - and you know, to this day, I'm not entirely sure if the Doctor even believed me as apparently there was nothing written about it in my notes! NOTHING! I think he thought that I'd just decided to come off them on my own accord (yeah, because that'd be clever). Anyway, this very kind and rather concerned looking man took one look at me and said, 'I'll take your blood (full in-depth panel) and send it to the lab but I'm putting you straight back on the meds anyway to treat your symptoms'.  Hallelujah. Thank you. Shame I had to lose my health (again), plus my job and home for someone to finally listen to me though, huh?!

2013 - 2017
By 2013 (two years later) I had recovered enough to return to work part-time. TWO YEARS OF RECOVERY, AGAIN! I'd had enough of the NHS though and had no wish to return to work for them after the way that they'd treated me. So I accepted a job at a cancer support & well-being non-profit. I worked part-time and life was good as I had a good work/life balance.

In 2014 I went full-time. I loved that job but I ended up being in charge of an area/region and ended up working all the time. The problem with being in charge is that you have to cover for other people but there is nobody to cover for you. The problem with working for a non-profit is that you have even less staff than the NHS and little to no budget. I worked days, nights and weekends. The other staff/volunteers had no idea of the number of hours that I put in (I worked out at one point that I volunteered triple the number of hours that I worked on paper). 

By 2015, I was starting to feel drained as I was hardly able to drag myself out of bed in the mornings. I fought for more staff and luckily that helped for a bit. (Remember though - this is WITH meds).

Mid 2016, I went to collect my meds from the local pharmacy and wasn't able to receive them - they'd stopped my meds again - six years later! AGAIN. I couldn't believe it. I was so busy with my job and helping other people that I didn't have time to go for a blood test though - I couldn't even get a lunch break. Once again, I'd collected a stash of surplus meds in my cabinet though and I knew that I had enough to keep me going for another year. So, I carried on regardless.

By Christmas 2016, I knew something had to give regarding having work/life balance plus I was worried about my parents too as they were my main child carers and they had hit their seventies with health issues of their own.

After the new year,  I knew that my seniors weren't prepared to take me on in a part time position so, in February 2017 I handed in my notice and left my job in March. It killed me to leave that job, I loved it and I loved the face-work with the clients but I was no use to anyone if I wasn't managing to maintain my own health. So, I started this journey that I'm on now (becoming a holistic nurse/coach) and I'd never been happier until...

Summer 2017:
I was running out of meds and suddenly realised that I'd forgotten to get back to the health centre about booking an appointment from the year before. I was feeling a lot better, thinking better and generally just happier all round. This holistic healing jazz was doing wonders for me. So, I went to book the blood test but actually received a letter about it that same day - I knew that meant being about a month off my meds but I was ok with that time frame (I wouldn't have stayed off them much longer though). 

By the point of my blood test, I was starting to feel a bit ugh (one month off them) and I informed the health care assistant that took my blood about how I was feeling - I knew she couldn't do anything about it but I needed to voice it so that it would be recorded in my notes.

The night before I phoned for my blood results I had flashbacks to 1999 and 2010 and all of a sudden I was drenched in this feeling that the same thing was going to happen again - it was going to come back as normal and they would take me off my medications again and leave me to deteriorate again, without even giving any kind of random care in the world, whatsoever.

Guess what? That's exactly what they did.

I phoned up the health centre the next day (the day that I shared the above post on Instagram) and the receptionist said - 'Yes, you're normal. Doctor say's return for a check up in three years.' I made her repeat it twice and hung up the phone.

Even if I was to come off my meds (as someone that's been receiving meds for nearly TWENTY years and who was gravely ill the last time that some random numpty Doctor took me off of them) why was I not being tapered off slowly and closely monitored? Two/three months, yes, with FULL in-depth lab tests, perhaps (not the standard blanket/one size fits all test again). But THREE YEARS? That's seriously taking the proverbial. It took me a year and a half for my levels to drop last time, I'm no mathematician but...

Did that particular Doctor even bother reading my notes? Did she not see what happened the last time I was taken off my meds by that Doctor who suddenly and randomly decided to play GOD with my life?! 

I felt completely demoralized, demotivated and despondent in one day but most of all I felt really hurt with an occasional tinge of anger. I just couldn't believe that they were going to do this to me again! A young woman with a family to look after (my daughter and step-son) and still, an entire life ahead of me. Am I a guinea-pig? Am I one patient too much for you financially? Or perhaps, you really just don't care and I'm most likely just a tick box exercise? I'm imagining it's the latter.

Anyway, that leads me to where I am today, folks. 

Don't get me wrong - I can see where I personally went wrong in 2010 and 2016 - I should've followed up my health on both occasions ASAP but I was 'in the thick of it' and too busy helping other people to help myself. I can totally see that now. Anyone with a caring heart and half a brain could see that. However, after having had my own caseload for the past four years I can also see that nobody followed up on me either. If that was one of my patients I would've been phoning them and advocating for them with the other members of the multi-disciplinary team involved in their care on their behalf. But who was there to do that for me? No-one.

One thing's for sure though - it's also made me even more determined to fully advocate for chronic disease / invisible illness warriors and our rights to long-term holistic support and care because the follow-up that we are (quite clearly) receiving at this moment in time is abysmal.

From here on in, I'll continue to blog with hope and inspiration as originally intended but I will post the occasional update about this as it becomes available, for those of you who wish to follow my journey.

#selfcareisnotselfish #balanceiskey

No comments:

Post a Comment