A Spoonie Christmas – Ho, Ho, Ho!

Good afternoon!

I’m not usually one to follow in the footsteps of others, but I quite like the idea of this! Lets just get straight into it…

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What illnesses do you suffer with? Ehlers Danlos Syndrome (type three), IBS, Chronic fatigue syndrome (ME), PoTS… *other conditions have yet to be confirmed*

Whats the craziest cure someone has offered you? Although a lot of people know about my illnesses, they don’t really offer me any ‘cures’ so if I had to state the craziest… Aloe Vera Juice. (Not that bizarre, is it?)

International day of persons with disabilities – what you want people to know? I could write an endless list but I’ll limit myself to just one! My disability is variable, somedays I may use my wheelchair, somedays crutches… But this doesn’t mean that there is nothing wrong with me…

Favourite guilty pleasure? Ooh, being asked what my favourite guilty pleasure is always takes a lot of thought… Probably binge watching rubbish TV programmes… 

Favourite hydration? *Prepare to realise how much of a bore I am…* Water!

Favorite inspirational quote? “You should not let the opinions of others define who you are”

Flare essentials? Hot water bottle/wheat bag, blankets, maternity pillow, pain relief and movies! (Just to name a few…)

Medication? Ugh, medication… I’m sure there are a fair few of you guys out there who will be able to relate to this. I’d rather NOT take medication. Most meds set off my IBS etc. and cause (extra) extreme pain. (I’m in pain already, so I don’t want MORE pain…) Yes, I take tablets that are essential but other than that, I avoid. 

What do you need ‘just a spoonful of’? Certainly not sympathy! I can’t stand people feeling sorry for me! But I’d quite like a spoonful of spoons… I’m running low. 

If you could get rid of one symptom, what would it be? Nausea. Of all things, nausea. I’ve come to terms with all my other symptoms, they are a part of me. But nausea really stops me in my tracks. 

Pets or service dog? Double no. 

Hospital selfie? Um, I won’t torture you with the sight of me, in hospital, looking rather worse for wear!

Support system? *Skipped* 

Warrior wednesday – how has your illness made you a warrior? I wouldn’t say I’m a warrior, I’ve just learnt to accept my illnesses. Take each day as it comes. Kick ass. 

Throwback of healthier days? My god, the distance I could walk. Walking was a huge part of my life, I loved it. 

Most helpful advice? “You know best. You know your body better than any other professional. So if you feel that you do/don’t want to do something, go with that feeling…” 

Shoutout to your doctor? Which one?! My GP – the one person who actually listens to me and tries to get to the bottom of things no matter how big or small. Honestly, I wouldn’t be the person I am today without him.

Favourite ‘safe’ food? Lettuce? No, seriously; gluten free spaghetti bolognaise! All the way. 

Illness awareness collage? *Skipped*

Christmas decorations? *Skipped* 

Pj’s and slippers? This is not a time to humiliate myself but posting a photo for the internet to see! But, imagine this: Chipmunk pjs, a zebra hoodie and reindeer slippers… Attractive, right? 

Favourite warm drink? EASY, hot chocolate! Mmmm. 

Christmas lights? *Skipped* 

Favourite christmas movie? How am I meant to choose? I LOVE CHRISTMAS MOVIES! Tonight I plan to watch Santa Claus 3, so that can be the favourite movie (of the day)

MERRY CHRISTMAS! 

**I know that I’m meant to fill in one question per day but I never get round to completing them hence why I’ve done them all now**

(I may get round to filling in the Skipped ones, eventually)

Thank you for reading, have a great christmas! x

 

Blood tests and staff members!

Goooooood afternoon! How are we all doing?
Yet again, I’m back with another post. After much thought, I came up with an idea which personally, I think it’s quite a good one!

Anyway, on with the post!

Being admitted into hospital can be pretty scary. Especially when you’re surrounded by medics who talk in an almost foreign language and countless members of staff (not that you know who they are!)

What is…
An outpatient: you’ll attend the hospital for an appointment but won’t stay overnight
A day patient: you’ll be given a bed, while you have tests etc. But again, won’t stay overnight
An inpatient: you’ll be given a bed and will stay overnight (or as long as you need)

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Do YOU know what all the blood test abbreviations are? No? Let me tell you…

I could write so much in this section! Instead, I’ll give you the most common abbreviations that are used…
(there is a link below, this gives all abbreviations and what the tests are)

FBC – Full blood count
LFT – Liver function test
ESR – Erythrocyte sedimentation rate
CRP – C reactive protein
U&E – Urea and Electrolytes
HGB – Haemoglobin
HCT – Hematocrits

http://labtestsonline.org.uk/map/aindex

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Staff that you’re going to come across:

Lead nurse: in charge of several wards, will deal with issues if ward staff aren’t able to

Matron: in charge of several wards, ensures excellent care and safety

Charge nurse: in charge of the ward

Staff nurse: will be assigned to patients upon admission, responsible for your nursing care

Nurse specialist: offers advice on treatment

HCA: able to meet your care needs, such as washing/dressing, bed changing etc.

Housekeeper: ensures bedsides are tidy, that patients are being given the correct food etc.

Ward clerk: administration role, can assist with general enquiries

Domestic staff: ensuring the ward is clean

(Of course, don’t forget the registrars, consultants, surgeons etc.)

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Well, I hope that all made sense! If not, feel free to leave a comment or email me and I’ll reply as soon as I can!
Thank you for reading,
🐰

Medical Supply Purse!

Evening loves, I hope you’re all well!

Here I am, back with another post!
(Note; I’ve not abandoned you guys for weeks on end, this time – an achievement, if I say so myself)

*My 20th birthday is coming up, so I won’t be active for a little while.*

Anyway, life as a chronically ill teen usually throws up some pretty eventful and unexpected challenges; so being prepared is a must, don’t you think?

For example, I thought it would be cool to collapse in the toilet and crack my head open again, the college first aiders weren’t around when needed so I took out my ‘portable hospital’ (a makeup bag), patched myself up (as per usual) and carried on with my business!

‘Portable hospital’? It’s simply a cheap makeup bag which contains medical supplies I might need – below I’ve listed some of the most important things in mine!

Aloe Vera Gel (sachets): I find this soothes any wounds, scrapes or bites etc, so I won’t be seen without some form of AV!

Cohesive tape: The likely hood of subluxations/dislocations while out are high, so cohesive tape is a quick way to support the joint. (I don’t always have a suitable brace ON me)

Scissors: That cohesive tape is one touch ass cookie!

Plasters: Seeing as my body has a tendency to collapse without warning, head bumps, with blood, are frequent!

Ring splints: Pretty self explanatory really! Gross hyperextending fingers, so Oval 8 ring splints are my saviour!

Pain relief/any medication: Oh the joys! I carry various packs of pain relief, so I know I’ve got a choice of what to take. As for the medications, who knows when you’ll need them? Decide to have a spontaneous faint and end up in the hospital overnight? You never know, so I go prepared!

Emergency contact cards: Yet another item that’s pretty self explanatory. I carry one in my purse and one in my medical purse.

Lip balm, hand cream and wet wipes: Not spoonie essentials, but who knows when I’ll need them!

Well, there you go; the main items in my medical purse!

Do any of you have a similar purse? If so, what do you carry with you?

Thank you for reading,
I’ll be back with another post soon!!

S. x

I am chronically ill, get over it.

Afternoon – I hope you are all well. Firstly, I want to apologise for my lack of activity on this site… If I could, I’d create an all singing, all dancing excuse, but the reality is, I can’t.
Combining health complications with a shedload of hospital appointments leaves me with very little spare time, time in which I would upload a post. There just aren’t enough hours in the day!
(Maybe that’s down to the fact I’m usually asleep? The joys of having ME)

Anyway, I can’t say I’m the most creative person when it comes to writing, but it is something I enjoy.
(Don’t even get me started on choosing something to base my blog posts on!)

Before composing previous post, I asked those with chronic illnesses, like myself; one thing that they wish everyone around them knew. I had an incredible amount of response to this question – which I found really interesting.

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Oops, I digress. I’ll just get on with the post!

I was reading a post online this morning about living with chronic illnesses and what people say when they find out about your chronic illnesses and I have to say, it was the most comforting thing I’ve read all week. It was incredibly relatable.
(I would copy the link to the document, but I can’t remember where I read it!)

5 things people say to me, regarding my chronic illnesses
(Invisible illness)

1. “Feel better soon” or “I hope you get better quickly”
Ha. I wish. The reality is, I will never get better. If anything, I’ll get worse. My condition is progressive. ‘Getting better’ is NOT an option.

2. “You look fine to me”
For a while, this kind of flattered me. I felt like crap, yet people still thought I looked ‘okay’. Soon I came to realize that in fact it wasn’t that I put on a brave face, it was that my illnesses were invisible. So those who didn’t know me, couldn’t understand how I looked fine, yet said I was so poorly. (A liar. My best friend called me a liar…)

3. “Do you really need to be in the wheelchair/using your crutches?”
No. I use it just for a laugh(!)
Do you really think a 19year old would choose to be in a wheelchair or using crutches? I think not. I don’t choose to use my wheelchair – I have no choice. My joints are highly unstable, I’m in chronic pain and at risk of dislocations and subluxations. Somedays I can barely hold my head up, let alone walk anywhere. So in fact, I do not use my wheelchair for fun.

4. “I know how you feel”
I CANNOT STAND THIS. You do NOT know how I feel. Yes, you might have experienced pain in your life, but chronic pain? Oh no. Trust me; you have not experienced living each day in chronic pain. It’s not something I’d wish upon anybody; so do NOT tell me you know how I feel.

This last one won’t apply to all of you, whereas some of the others may.

5. “Drink some Aloe Vera juice each day, it will help you”
My god. JUST BECAUSE YOU KNOW SOMEONE WHO DRINKS IT AND CAN NOW GO OUT RUNNING DOESN’T HELP ME.
(A family member reckons I’m missing out because I don’t drink it)
Aloe Vera juice isn’t going to cure me. Anyway, it tastes vile. I have a genetic condition. That will progressively worsen. I highly doubt your extortionately overpriced, disgusting juice is going to cure me.

Well then, there you go – 5 things people say to me, regarding my chronic illness! Hopefully some of you guys will be able to relate, drop a comment if so!

Thank you for reading, I promise I won’t abandon you guys for so long next time!

🐰

You don’t understand, do you?

Afternoon guys, I hope you’re doing ok! (If not, sending spoons your way)

*Apologies for not posting, I’ve been poorly with tonsillitis*

Anyway, today’s post is going to be a little different. You know those family members (or friends) that just don’t understand what life with a chronic illness is like? Yeah, they make my blood boil! Hence why I’m here…

I’ve asked some fellow spoonies a question: If you could ensure that everyone understood one thing about your life with a chronic illness, what would it be?

My answer would be: “Some days are worse than others. Today I may be in a wheelchair, tomorrow I may not. Today I might go out, tomorrow I may be bed bound. My disability is variable.”

{Permission has been granted to use these answers}

~ “I don’t always say every time I’m in pain or everything that is hurting and when I do say, I feel like I’m naming my entire body.”

~ “It can be incredibly lonely and isolating.”

~ “That no one really sticks it out. Long time friends disappear or only contact you now and then online. Family stops calling because you don’t have much to talk about when your life revolves around managing your illness. You feel useless because you can’t hold up to societies standards like work at the same pace, if at all.”

~ “Being in pain uses energy, a lot of it.”

~ “How tired I get. By 12noon I’m struggling. Badly!”

~ “I sometimes get scared, when I think how it will all end.”

~ “I have good days and bad days. It won’t get better. Everyday could be changed due to pain etc.”

There ya go, I received 30+ answers and have only chosen a few; but I’m hoping it’ll give those who don’t have a chronic illness a little more of an understanding and those with a chronic illness something to relate to!

Maybe leave a comment and tell me what you’d like to make sure everyone knows?

Anywhooooo, have a good day, take things easy and remember; you can do this.

Thank you for reading!

🐰

Short and sweet: Welcome!

Good evening guys, I hope you are all well.
This is a little exciting – my first post on the new blog! Eek.
It’s taken a while to get up and running, and to decide what my first post should be about but here I am, attempting to make a start.

I’ve decided that I’m not going to bore you all with details about myself, my illnesses and my life because I’d rather my blog be ‘generalised’ than all about me!
Yes, I will mention my own experiences etc, but that’ll be to give my posts structure and to share my perspective and findings in life.

Anyway,
I’m planning on setting aside some time this weekend to compose a blog post so watch this space! {But this depends on fatigue/pain levels etc – life of a spoonie eh!?}

There we go, a short and sweet introduction into my page!
I’ll be back soon with a new post for you!

If you’ve read this far; thank you so much! It means a lot.

S. x