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| The Jar with all the Hospital Life |
Hi Guys,
So, it’s been a little while since my last blog entry but things have been a little hectic on this side. But haven’t they for all of us lol
I though since I spend a lot of time as a resident of St Andrews War Memorial Hospital I would focus this blog in the area of ‘hospital life’.
See, its one thing to have one or even just a small handful of experiences in a hospital environment in your lifetime. Its kind of like one of those moments that sticks with a person: a moment you think back to in a certain situations; like “oh, remember that time I was in hospital”
I don’t point this out to discredit any painful or traumatic experiences that anyone has gone though because we all have our own upsetting and traumatic events but, for myself, being admitted to hospital is just about as regular as brushing my teeth.
Since September of 2016 (after a 6 week stay in hospital) I have been receiving an intravenous treatment called immunoglobulin(IVIG for short). I have spoken a fair bit about this treatment in another one of my blog entries but basically, immunoglobulin is separated from donated blood and then infused into a patient with the intention of reducing pain with people who have my condition and placing the condition into a, somewhat, temporary remission someday, for a period of time.
Due to the fact that I have two other neurological conditions that the doctors and I are juggling, plus the fact that I have some very serious allergies to MANY medications and I often have trouble tolerating the IVIG, a decision was made early on that I would be admitted to hospital as an inpatient rather than a day infusion patient as it was far safer for myself and if and when complications did arise the staff were a lot better equip to deal with it quickly and efficiently.
The down side to this whole inpatient plan is that for the last two and a half years a huge, gapping chunk of my life has been spent living in a hospital bed. I know every single nurse by name (and about their lives also) on the 5F Neuro ward. I know most of the orderlies and volunteers throughout the hospital who take you to MRIs and Xrys and show you to your rooms. And I know the same people at the front desk who always say, “Oh you’re back again”, as if its almost a choice that I just make for fun because I have nothing better to do, but I just politely respond, “oh I just can’t stay away” while on the inside I just want to pick up my bags and run out the door.
I always equate being in hospital to sorta being like being in seventh grade camp; you eat dinner at a ridiculously early time, they take away any medications you have and now they are in charge of when you can take them, you need to ask the nurses if you can go for a little walk around the ward and they check on you all night long with a flash light to make sure you are still there/alive (but at the very least you can still smuggle chocolate in).
Basically being in hospital makes you feel like you are 12 years old again. From the minute you walk through those doors you are entrusted into their care, which basically means you are stripped of almost all your control.
You need to ask a nurse if you need more water, if you need more towels, if you need ice or a heat pack, if you want to go for a walk, if you need to take a med, if you want your door closed, if you can take a shower in the evening instead of the morning…the list goes on.
I do this once a fortnight. Sometimes its just for one night if I’m really lucky, if things go really well and I have no complications at all I can go home the next day but this doesn’t happen very often.
Most times I’m in hospital for about three days recovering for the infusion and all of the side effects that came along with it. And at least while I’m in hospital they can administer certain medications to help me recover more smoothly than I would be at home on my own. Trying to manage the side affects and the other neurological disorders all at the same time on my own at home is a mess so I can truthfully say I am grateful that I have access to hospital support and care, but it doesn't make it any easier to re-live the same cycle every two weeks.
Hospital starts to take over your life when you are admitted every second week and you end up spending most of that week in hospital. I can no longer work because of all my nerve damage and muscle wasting, but on top of that it is very hard to be employed by someone who understands my situation and is accommodating too my unique health situation. My last few years before I got sick all of my work experience was working as a Nanny and it is very hard to find a Nanny family who understands that I will be unavailable two weeks out of the months plus there is the high possibility that I could become very ill unexpectedly and would have to cancel at the last minute because they have ended up in hospital yet again. I don't want to be that Nanny (or any other employee for that matter).
I have also become a lot more isolated as far as friendships go compared to the amount of friends I had before I got sick. Of course I have a small handful of friends and family that I hold close and that I know will always be with me along my life journey, but going in and out of hospital on such a regular basis and dealing with my illness’ pulled me completely away from my big social group of friends. It is never anyones intention to lose contact but when I'm dealing with my illness' ad their world keeps on spinning life just happens. I also think it's really hard for people to understand how debilitating all of this can be until they have seen it up close at its worst and it's the the people who are still in my circle who are the ones who have seen all of this raw; without an instagram filter or a love heart emoji attached to it.
Not everything about hospital is bad. It isn’t some monstrous place. It is a place where I have really learnt a lot about myself. I have been pushed to my absolute limits with pain, the kind of pain that you feel like is literally going to kill you but you get through it because you have no other choice. Now when things are bad I look back to those experiences and I think to myself ‘Well I got through that, so I can get through anything’.
It is also a place where people have shown me incredible kindness. There are particular nurses who look out for me and bring me things like juice or soft drink and write love hearts on my white board and even share a hug or hold my hand when I need it. It’s those small acts of kindness that make such a huge difference to my day.
And my Mum comes to visit me EVERY SINGLE DAY I’m in hospital. She’s my rock and I don’t know what I would do without her.
I think the hardest part about being in hospital so much is the little bits that you lose of yourself each time you go in. You become a number. At the end of the day the hospital system doesn’t really care about your feelings; it's there to keep you alive, by any means necessary. I have gotten to a point where no amount of needles, blood tests, cannulations, lumbar punctures or any other invasive tests scare me but the part that I hate is the mark they leave behind; the massive bruises that can take months to heal and splitting headaches from the lumbar puncture fluid leaks. That is the part I don’t think I will ever get used to.
At the end of the day I really am lucky that I have access to all of the health care and treatment. There are so many people all around the world who would benefit from the treatment I receive but for a multitude of reason they don’t have access to it. But it doesn't change how weird, hard, stressful, bizarre, odd, funny, difficult, sad, tricky and lonely living a half hospital half home life.
My hope is that further down the track we start to stretch the length of time in between the infusions to three weeks and so on…
Finding passion in photography has been comforting as I have a lot more freedom to do shoots when I am feeling healthy outside hospital and then I can edit the photographs while I’m in hospital.
Anyway, enough rambling from me. My next admission is in a couple of weeks and I thought I might do ‘A day in the life a patient’ on instagram and like it back to this Jar post so you can see a little more of what things are like in hospital day to day.
Thanks for reading guys, I’ll be posting again really soon
Love and light to you all,
Megan xo
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