Things to take your Chronically Ill friend in hospital

When you first get sick, the amount of cards, flowers & visits is almost such that you can't keep up with everything.  There isn't a day that someone doesn't come to visit you & you no longer have room to display all your gifts.

However, as time goes on & your hospital visits become the "norm", things start to die off.  When you say that you are being admitted again, people respond with "how long this time?"  Your visitors become the nurses looking after you, & those closest to you know exactly what you pack in your usual hospital bag.

Recently I have had quite a few of my fellow Rare Warriors spending some time in hospital & feeling rather overwhelmed with the whole situation.  I asked on my Facebook page what other friends would love to receive, & what ideas they had.  When I posted this, I had such a great response & realised that many friends had no idea what to bring with them or if I still wanted visitors.  With all this being said, lets jump straight into the ideas that were thrown around:

Your Time
Please don't forget about us!  Please come visit us in hospital, send us a message or give us a quick call.  Knowing that people still care about us & are supporting us through our journey means more than anything.

A Cuddly Toy/Pillow
Hospital life is tough.  There are moments that the tears flow freely or when you are completely overwhelmed at the entire situation.  Everyone's lives continue around you & sometimes all you need is a cuddle to help you through that time.  A Rare Bear is super special too as these are handmade & unique - just as rare as us!  It also helps to have a little bit of home with you whilst you are stuck in hospital.

My beautiful friend Ash - with Rarity from My Little Pony

A Soft, Beautiful Blanket

Hospital is cold, & I know that my treatment causes my body temperature to drop even further.  I have sometimes had up to 7 blankets over me just to try stop me shivering!  They are stark, white places & having something bright & cheerful can really change the whole mood of the place - my doctor always comments that she knows where to find me as she just has to look for the pink/unicorn things.

A Hot Water Bottle/Wheatie Bag

Muscle spasms & pain is common place with being bed bound; having permanent lines inserted; or even just the stress of your 'normality' being flipped upside down.  These help to ease this pain; relax your muscles; & provide some comfort.  I don't go anywhere without mine & have one at home, one at work, & one that I take with me to hospital.  They really help with headaches, period pains & tension.

Hand Sanitzer & Hand Cream

Often Rare Warriors have compromised immune systems & the hospital hand sanitizer is so strong & reminds me of being in hospital, so I love those dinky little gels/sprays that I can carry with me at all times to prevent the spread of germs & keep me feeling fresh.  These are often quite drying though, so hand cream goes hand-in-hand with this (excuse the pun!) & I am constantly applying lotion to try keep my skin feeling soft & nourished.

Lip Balm

I don't know what it is about being in hospital, but my lips are forever dry!  And chatting to fellow hospital-goers they said the same thing.  I am not sure if it is the constant air-conditioning; the change in atmosphere; or the different treatments, but my lips pay the price.  I take a massive jar of vaseline with me, & I know when I was on a ventilator this is all I wanted.

 

Colouring In Goodies

Being stuck in bed for up to 24 hours a day means you can get bored; your hands don't know what to do; & there is only so much TV that you can watch!  A friend makes the most stunning colouring in books that you can purchase online & download then print yourself.  I know that I will be taking mine in with me for my next admission.  You can buy these from Etsy or contact her directly.

Books/Magazines

I will be the first to admin that I am a complete & utter bookworm!  I have known to stay up until early hours of the morning to simply finish a book.  I love everything from Harry Potter to Jodi Picoult to murder mystery.  Recently I was sent some books by Christine Bernard & finished all of them in a week as I simply couldn't put them down.  She has just released a new one so give it a try :)  Plus she is a South African author & I always prefer to support local & celebrate this talent that we have.

Travel Sized Toiletries

With many pairs of pajamas, medication, stuff from home, work goodies, cellphone chargers & adapters; my bag literally split at the zip during my last admission.  I had to take all my toiletries in a different bag just so they didn't leak all over, or spill out of my bag.  Then when I popped into the local shopping centre I was reminded of the smaller toiletries such as body wash, body cream & so on.  It would make such a difference not just in space, but to also make us feel cleaner & prettier - & to take away the smell of hospital that seems to seep into every pore.

Dry Shampoo

Oftentimes you have a drip inserted, or some kind of appendage that makes a normal shower difficult, & the very idea of washing your hair is just beyond what you can cope with.  My admissions are only 5 days at a time, but I know there are many people who are in for much longer.  Hair goes greasy quickly when it is constantly against your pillow, & a little container of dry shampoo is an absolute lifesaver in making you look & feel better!  If you can't bring one of these in, perhaps offer to help wash our hair in the basin.  It will mean more than what you could ever imagine.  It's amazing the difference that clean hair can make.

Socks/Slippers

Going back to how cold a hospital can be, socks are an absolute necessity.  The best socks that my mum ever got for me had little grips on the bottom so I wouldn't slip when I got up to go to the bathroom.  If my feet are warm then my body seems to maintain heat a lot better, which makes me a lot more comfortable.

Data

I don't know about you, but I FLY through mobile data whilst in hospital.  Not all hospitals have WiFi & thus any time spent online, on Facebook or even whatsapp causes my data to run out a lot quicker than it does when I am just at home.  It is not something people think of, but this helps us keep an eye on what is happening outside of the hospital walls & also keep our family & friends up to date with how things are going.

Eyemask

Lights in a hospital are on 24 hours a day & this can make sleeping difficult.  Something that can be used to cover your eyes makes such a difference & can mean a proper nights rest - believe me we need this!  Sleep also helps your body to heal quicker so hopefully we can go home quicker.  There are some adorable masks at Typo & all sorts of pharmacies that would truly brighten our time away.

Facial Mist & Body Spray

The smell of hospital is one that is very noticeable & seems to hang around in our pores, leaving a lingering smell & reminding us that we are stuck inside & not in our own space.  

A facial mist is so very refreshing (my favourite is this one from Pink Cosmetics) & helps to cool down your skin should you have any reactions to the treatment or medication, as well as moisturising.  

The body spray keeps you smelling fresh & clean - it's great to just spray a little after a long snooze, or just before visitors pop in.

These are just a few ideas that I have collected from chatting to friends & family.  There are so many other ideas, & just anything that will get us to smile (including you!) is so so appreciated.

Thank you for loving all of us throughout our journey x

Communicating with Aliens

 I have just returned home after an 8 day hospital visit, & boy oh boy am I happy to be back!  In my own bed, with my husband & furry creatures - life could no get much better than this.

I had a slight set back about 2 weeks ago & I just felt like I was slowly being pulled down into my dark hole again.  Rather than risk a huge setback, my doctor & I decided to tackle it early on & go through 5 sessions of plasmapheresis.  All the arrangements were made, more time had to be taken off work & we set off for Durban bright & early on Monday to be admitted.

I went straight into ICU where I was welcomed back with open arms!  The nurses know me by name now & have become like my second family.  We even laughed because I went into the same bed I was in last time - they joked they were going to get a plaque installed that read "Megan Hunter's Bed".  My doctor came to visit me, ordered blood to be taken & then I had to wait for the anesthetist to come to put my pipes in.  The nurses battled to find a vein to put a drip in, so decided to wait for the doctor to do it when he came as well.  I generally have very low blood pressure & my veins go into hiding the moment a needle is mentioned!

The anesthetist arrived & told me exactly what he would be doing...
Drip in, pain medication & something to make me "float" would be given through the drip.  Then he would give me a few local anesthetic injections in the area & the the feeder wire would be fed through my jugular vein into my heart, before the CVP tubing would follow & then the wire pulled out, & the tube stitched in.

Me, miserable after having the CVP line inserted.

It is painful.  It is not pleasant.  It is most certainly not the worst thing I have been through, but it is not a walk in the park!  Plus these were put into my neck, so looked like an antennae that I was using to communicate with extraterrestrial life!

Desmond (the chap that does my plasmapheresis) arrived to start my first treatment & gave me some terrible news...  The wrong pipes have been put in!  Somehow there was miscommunication or a misunderstanding & the anesthetist had put in a CVP line, & this was meant to be a dialysis catheter.  Very different.  The CVP line is a lot smaller with 3 heads coming off it, whilst the dialysis catheter is thick with only 2 pipes showing.  I was horrified!

2 hours later the anesthetist arrived back to insert the correct lines.  He apologised profusely, held my hand & talked me through what was going to happen.  A feeder wire was to be fed back through the CVP line, this was going to be removed, & then the thicker dialysis catheter would be pushed down.  He explained this would be more painful as it is a much thicker tube, & my body is already injured from the first time around.  He gave me more pain medicine, as well as something to help me relax; & then the correct line was inserted.   

Me, tearful & fed up.

We also discovered I am allergic to the OpSite plaster they had put over the previous pipe, as I had gone red & itchy with tiny pimple-like bumps forming just in that time.  

The nurses held my hand through both procedures & cried along with me.  They brought me cool drinks, spoke kindly to me & phoned my doctor as soon as everything was correct.  The X-ray department came down to check the pipe was in the right place & then they left me to sleep.  No plasma for me on this first day as they decided my body had been through enough & they just wanted me to relax & get over what had happened.

My sweet husband & mum came to visit me that day to cheer me up & keep me positive.  They were there for me almost every day; taking it in turns to come visit.  Unfortunately the hospital I go to is about an hour from home, & half an hour from mum so not close enough for anyone to just pop in anymore.  Also I think friends & family no longer think me going to hospital is such a big deal.  I have done it so often & am in every year at least once that I think it has become boring for them!  I remember having masses of visitors when I first used to get admitted, as well as cards, toys & flowers galore.  Now that I am a regular, this has tapered down a bit & some visiting hours it was just the nurses there keeping me company.  It is understandable though & it doesn't upset me - it is simply the norm for some people that I am back in hospital.  Almost like I am going to stay with a relative.  I do appreciate those friends that could make it through to visit, as well as all the lovely messages & encouragement I received throughout this time.

They tried to give me pain tablets to take, but I battled to swallow them.  This was especially difficult as I usually toss my head to get food etc down when I am battling, but now I couldn't move my neck properly given the position of the pipes.  So it was kiddies syrup for me!

My first plasma treatment started early on Tuesday morning...

It is such a weird sensation, & I always get freezing whilst it is happening - hence why I am all bundled up under about 5 blankets!  But these new machines are wonderful.  It only takes about 1 & a half hours to complete it; compared to the old machine which used to take 4-5 hours.  It isn't painful, but you can feel the vibrations of the machine - my lips feel like they are buzzing...

Midway through treatment, & after all 5.

Last photo as an alien!

I love how quickly I can see results with plasmapheresis.  In the photos above, you can see how initially my smile was lopsided, & my one eye was more open than the other.  The other 2 photos are after all 5 treatments & show both my eyes open properly & my normal smile!  It is always so exciting to see these results; to hear myself talking clearly; to be able to brush my hair without having to support my one hand with the other; to lift my head off the pillow without having to physically lift it off using my hands.  It is the small things that bring me so much joy, & the nurses & doctors celebrated along with me in every small victory!

The biggest concern was my blood pressure through this.  I usually suffer with a low blood pressure, but it dropped right down to 80/40 (healthy BP is 120/80) & I often felt faint & dizzy; & the nurses had to help me to the bathroom.  My doctor came to check on me at least once a day, & even came in on her weekend off to bring me a flower & show off her new haircut.  She is my other mum & I am so grateful for all she does for me!

When you are in ICU it is not easy to escape.  You are constantly connected to heart monitors, a blood pressure cuff & a thing that goes around your finger that measures oxygen saturation.  I called this my ET finger as it glows & makes for good entertainment!

After all my treatments were completed, my pipe was removed & I was kept in for another day for observation.  They always prefer to be safe with us snowflakes & ensure we are the best we can be.  No chances can be taken!

Then I was transferred to my old home, Medical Ward 2.  I have been coming to this ward since my diagnosis.  The nurses know me, my family & my husband.  The have seen me through my good & bad times.  They have been there to help me bath when I am too weak, they have held back my hair when the chemo made me sick.  They have fed me when I couldn't do it myself, & given me more hugs than I can even count!  It was like seeing all my friends again.  They made a plan to get me a private room (due to my lack of immune system I can pick up any illness very easily) & quickly settled me into a room fit for a queen!

I changed out of my hospital gown as soon as I could & put on my normal clothes!  What a good feeling...  I could now also wash my hair, which after a week of doing nothing was looking pretty grim!  I had another reaction to the plaster that had been put on, so the nurses helped me change this to a smaller one & I was set to relax, sleep & recover.

Itchy itchy!  The reaction to the plaster

The lady who brings the meals around remembered me, & knows I like tea with no sugar throughout the day then a hot chocolate at night.  She knows I don't have dessert, but do like yoghurt with my breakfast.  She was so sweet & it was so lovely being able to catch up with her & learn how her family has grown since the last time I have seen her.

So although this was a horrible experience with the pain, low blood pressure & being in hospital longer than expected; it was lovely being able to see all my friends again & make some new ones.  I hope I don't have to go back any time soon, but if I do I know I am in the best hands ever & will be looked after.

It was dreadful when the 12 year old boy next to me who was waiting for a heart transplant died in ICU, & it reminded me that life is short.  We never know when it is out last day on earth.  We need to live every day as if it is our last.  Be kind to others.  Smile as often as you can.  Make friends.  Never give up hope.  And pray every day.

Little bit of a squiff eye - I hadn't had my morning nap yet!  Otherwise all muscles working perfectly.

I am home now, relaxing with my animals & my sweet husband is waiting on me hand & foot.  I feel strong.  I can talk well & even managed to do some loads of laundry this morning.  I am going to cut my hair this afternoon (long hair with MG is not easy - there are times I cannot even brush my hair, let alone tie it up) & other than that I plan to take it very easy.  Tomorrow I go back to work & hopefully can catch up on some of it that I have missed.

Thank you to everyone for your love, support & kindness through this awful time.  May the next time I have to go into hospital be when I am giving birth to our miracle baby!