A beautiful servant. A dangerous master.

                          

I feel like my whole life I have been easy going and a worrier to some extent. I worried about things that now seem so trivial to me its laughable but in the moment these were huge to me and how I felt. I am sure I am not alone, am I?

I think we all have our own insecurities and whilst they feel so big and impending in that moment, I now look back on most of them as nothing more than a memory or fleeting feeling or worry.

Some, however, last longer than others and stick with you for a lifetime. There are some that sit in the back of my mind and simmer away whilst occasionally boiling up to the surface, then resuming position in the background of the mind. Not always at the forefront of my conscience, but never forgotten. For me, these are the worries that sometimes make me rest uneasy and pop into my mind during difficult times. I don't know if I am alone in dwelling on these worries or if it is normal, either way though...it sucks.

My worries can range from the simple things like what to wear to an outing or my nail colour and hairstyle, all the way through to bigger worries like my body image that has changed so much from the girl I once was, how I look when I feel really unwell, whether people still see me as 'me' instead of just the sick or disabled girl, how my studies are going and my deepest worry, how much of a burden I am.
To my family, my friends, my nurses, my doctors, my health professionals, my university. My everything. I worry I burden everyone and that right now, I cannot change it. I hate it.

This worry is so strong  and deep it physically and emotionally hurts some days, whilst other days it barely crosses my mind. With my life so different and my illness being a key defining feature over the last few years I can't help but be saddened and worried that I have burdened so many people and I do not know how to 'fix' it. I don't know if this is a common feeling amongst chronic illness sufferers or disabled people or simply people who need a helping hand, but I can imagine it might be. For me it's the loss of independence and the unrelenting factor of having to rely on others in almost every aspect of my life that gives me this negative feeling. Some days I don't want to wake up to my nurses and struggle through the routine. Some days wish I could just go to the shops myself, or my appointments or make my own lunch and dinner or help out more around the house and just be normal again. I wish I had space. Instead I rely on people and it feels very burdensome.

No one has ever said I am a burden or anything to me directly, and I know in theory it is just a thought and nothing more, but it haunts me. I was so independent and useful yet now I feel useless and unhelpful. My life is such a contrast it almost feels surreal when I talk of the better days. Like I am telling the story of someone I once knew, rather than that of what makes up parts of me and my life story. So much has happened these last few years it is just hard to move forward and be 'okay' in my situation and the vast impact it has had on so many things.

Whilst I am slowly improving everyday, I still rely so much on so many it makes changing these thought processes difficult. I have always tried to ensure that my illnesses or being sick does not define me, but some days when I'm stuck in the thick of it I can think of no higher definition than this and this leads to the ultimate burden on everyone in my life, especially my amazing family.  It rules my life and is there 24/7. Maybe I worry so much because the other things that I like to think define me are 'things' in my life but are perhaps not as controlling and uncontrollable, so seem less obvious at times.  When I combine the worries of illness defining me and being a burden they are far more 'real' and scary than I can describe.

I would hate for people to pity me or humour me with their kindness because they feel sorry for me. I don't want to be 'that' burden you have to deal with to comfort me or your personal guilt. I want everyone to see me as more than just my conditions and limitations. I want people to want to be around me and be part of my life, as I do theirs. But I do not want to be the burden. I want people to see the whole me and choose yes, rather than choose yes because of other reasons. I want my life and my interactions to be real and for that I need to try to let go of this worry and find peace.

Hard. So Hard. I don't even know where to start.

I understand theoretically my worries are nothing more than my mind ticking over but every so often I feel like they win and they are my reality and my perspective. Mindfulness is hard and learning to deal with this guilt is harder. It may be a worry or thought I carry with me forever, but I hope not. 

The mind is a beautiful and mysterious thing - what will be my next worry?  Will it stay long?

I don't know but I guess thats the beauty and bane of humanity and our psychology, it knows no boundaries.

Lottery.

If you asked me two weeks ago what I thought of our health system, my answer would've been mostly positive. Although there are downfalls I have been lucky to have a few amazing specialists and team who support me, so for the most part I can't complain. 

If you asked me last week what I thought of our health system, my answer would be one of frustration and disappointment.

If you ask me today what I thought of our health system, my answer would be that it needs some serious improvements, but there are angels in this system....if you're lucky enough to come across one, that is.

At times health, healthcare and treatment are like a lottery. You might never win and have to fight the system your whole life or you might win after your millionth entry. You might win on your first go or you might have partial wins over time. No one has the same ticket and no one else knows how important this entry is to you. It's just you, hope and whatever gets drawn. 

Well after a good run of health, I got my kick in the butt and I'm over it already. Quite spectacularly I have fallen from my perch of feeling semi-human right into a new pile of rubbish. Who was I kidding when I started to think I had this worked out. 

During the past week or so I have witnessed and experienced what it's like to be desperate for help and stuck in the thick of healthcare lottery. Whilst I have been treated well and listened to, I have also had the fear of being put into the too hard basket, yet again. A place where no one wants to 'own' your problem nor deal with it. It is all just too hard and sadly for many people out there, it's also too familiar.

As a result of my new dilemma, when I sat in my specialists office last week I shed a tear. Normally, I try to be strong and objective and save my tears for private but this time I just couldn't. I was not crying because I was treated poorly. I was not crying because of my new issue. I was crying because I felt desperate and relieved at the same time. 

Did I get a cure? No. 

Did I hear what I wanted to? No. 

Was it good news? No.  

Would I leave with the problem resolved? No.

But what I did get was someone to stand up for me and show me that I count - Someone decided my number was worth pulling. This came as quite a relief because I had just experienced the polar opposite to this days before. I was told earlier in the week that I was booked into an urgent clinic and that they would help me, only one day later to be told that the clinic was not appropriate and has no expertise in dealing with my issue. That's it. No direction, just lost in motion. I felt like the system betrayed me and left me without the help I needed. I was terrified of getting lost in the system and forgotten as my usual teams do not deal in my new area of issues. There was no real 'go-to' person to help me or pull my number for the jackpot win this time, and it was frightening. I was shoulder deep in the healthcare lottery limbo and it was awful.

I was so desperate for help and I didn't realise it until I sat in the hospital and my specialist apologised to me for the way the health system works and acknowledged the difficulty for me to be dealing with another thing. With a few phone calls to other specialities and an hour of her lunch break organising appointments and surgery to help my new problem, she validated my desperation and she was proactive about helping me. This day I was lucky, this day I won the lottery. 

I was treated with respect and feel like the healthcare system worked for me, but in actual fact when I look back on it, the reality is, today I had someone in the right position fight to make the system work. The system itself didn't technically work for me at all. Now, I know I cannot really complain when I have a few amazing specialists on my team who I consider angels and I hear of so many people suffering, but I do think our healthcare system is broken. 

Had I not have a few wonderful specialists fight for me and help me through navigating a system of bureaucracy and hierarchy I would be worse of. In fact today because I had someone fight for me I have a plan and an appointment and have already undergone a procedure with a team onboard to help my new issue and continue my care in this area. Two speciality areas that seemed unreachable before were reachable because my doctor fought for me. If I had no one in the 'right' position to turn this situation around and be my advocate I would be stuck waiting and hoping for my lottery ticket to be drawn.

This week I entered the lottery that should not exist. 

This week the healthcare system revealed its flaws in brilliant colours. 

This week illuminated how lucky I am to have an amazing healthcare team who go above and beyond to help me every time my body throws a new curve ball.

This week and EVERY other week I wish that healthcare wasn't such a lottery and everyone 'won' every time they needed help. 

I DID IT!!!!

I have been holding my breath all month of February and it is with great excitement and happiness I can safely say I have made it.

I have made it through the biggest time specific hurdle since becoming unwell, which is getting through nasty February without being admitted for serious illness resulting in months on end stays in hospital. This milestone has been a long time coming and I have waited 6 long years to say February was A-okay.

I don't know if it's the weather, getting run down or a combination of everything in my life colliding with my broken body, but around February every year since I got sick, without fail I have spent in hospital and coincidentally gotten seriously unwell with infections or other autonomic issues and embarked on super long admissions. This year is different. Yes, I have been admitted during February but I am currently lying in my bed in my room, at Home typing this and it feels so, so good! 

It sounds like such a trivial thing to be celebrating but to me, it feels astronomical! I probably give it more significance than it deserves but I don't even care! I think my elation extends further than the cursed month because right now, I feel like I am doing really well. I am continuing to improve every month with my miracle treatment and have been able to start doing things I always hoped for but never dared to dream of. I am getting somewhere and I can feel the change is coming in some areas of my health.

It is not realistic to think that my life will follow a constant upward trend because, well, nobody's ever does, but right now I'm savouring this upward trend and trying to make the most out of it. Life with a chronic illness is so unreliable and I am continually learning this lesson on a daily basis. Despite the odds stacked against me, my family and I have been pushing and fighting for me to have a life beyond this illness and it seems like one day this could be more of a reality. Whilst this isn't something that will just go away with positive thinking, diet, life adjustments or medication (as of yet) this is something that is changing for the better. I am changing for the better. 

February is over and I am ready to keep kicking chronic illness in the butt. 

Limbo land

Limbo land.

Have you ever been at a party or outing where you're socialising and then slowly people break away and you're left alone with the decision of what to do next? Do you join a conversation? Do you get out your phone? Do you soak up the atmosphere and enjoy the solidarity? 

I think I have done all of those things depending on where I've been. All which have got me out of limbo. Limbo - it's that uncomfortable moment where you feel a hint of uneasiness and maybe even sometimes nervousness or apprehensive. Well, I'm feeling a bit like that right now but in a completely different context. My health rehabilitation pathway.

I have been doing the 'hospital dance' for the entirety of the last 5 and a half years and it has been a long, tedious experience. People have come and gone from nurses to kitchen staff to doctors to allied health, but my team framework has remained very similar. I have had a structure that has remained largely unchanged and a process that has for the most part, been slow but somewhat successful. 

I'm now facing a new experience where there is potentially a reduction in my allied health rehabilitation and I feel like I'm in limbo. It hasn't happened yet but it feels like only a matter of time and it will all be so different. So different from what I have known the last few years and so unknown. For the nearly 4 consecutive years I spent in hospital I had the same kind of routine that was almost identical every day and then since leaving hospital, my rehabilitation program has involved the same few days at the hospital seeing therapists every week. It has been a constant state with an ongoing and explicit goal of improving my function and independence. There has been times of uneasiness with shifts in direction but the task has always been clear and the path guided, none of this limbo business I'm beginning to experience now.

Although these services have not ceased yet, I feel like I'm in limbo because thinking about the changes has me wondering where to next? And do I want this change or not?  I think the worst part in this instance is that I honestly don't even know what I want. I desperately want to not have to attend hospital multiple times per week every week but I also don't want to loose the therapy I am receiving. In my subconscious and maybe even my conscious mind, reducing my rehabilitation signifies to me that maybe there is less hope. The fact that people are working with me to improve my function and life has always assured me that not only myself but others have hope of my recovery/improvement. With the services potentially being withdrawn what does that mean?

I'm told that reducing rehabilitation is a good thing because it means I'm doing better, which I am, but to me it seems quite the contrary. Yes, I am improving and making some really good gains in some aspects, but at the same time I still cannot do everyday tasks like sit in a normal chair or wheelchair for longer than 7-8minutes before losing consciousness or put both arms above my head for example, and that is frankly not good enough for someone in their twenties - not eighties!! I am happy people can see my improvements but I am concerned because in the scope of life and function, I am still severely limited and far more dependent on others than I am comfortable with. There is so much to work on and improve so is now the right time to reduce? Does anyone see it like me? Or is this all that is expected of my recovery? Should I fight to stay at this level or fizzle down and except a professional opinion? Maybe it is because I'm doing better? I don't know.

I don't know what I'll do with myself, nor how it will affect my ongoing journey and that  part has got me stumped. I have known structure and institutionalisation in hospital the last 5-6 years of my life so it is all just very limbo and I guess a little scary. 

It could be an exciting transition where I might be able to find myself a new hobby or work with external options and focus on my university studies or it could be a real shock and I'm a little nervous of the latter. Maybe this change should carry a positive connotation or maybe it is negative, I just don't know. 

When something becomes part of your daily life and health journey for so long, it is hard to see beyond the known. Limbo land here I come...I think.