Managing pain

Following my last post on Managing Medications I thought I would write about managing chronic pain. I have fibromyalgia and Ehlers-Danlos syndrome amongst other things so I'm no stranger to pain!

I tend to use a pain scale to judge how much pain I'm in and then decide on pain relief accordingly. At this point I'd like to mention I'm no doctor. I'm just sharing my experience of managing pain.

The chronic pain scale. Unsure of source

Anything between three to five is a good day and normal for me. To be more comfortable day to day I utilise things like epsom salt baths, cannabis oil (you can read my review here), heat packs and I use orthotics on my most troublesome joints such as my wrists, knees and hands.

Between 5-7 I use things like hot/cold therapy topical pain relief like muscle rub or ibuprofen/diclofenac gel. Over the counter Medications like paracetamol and ibuprofen (careful not to use two of the same Medications at the same time. E,G. Ibuprofen/diclofenac gel and ibuprofen tablets.)

7-9 I use prescribed Medications such as naproxen and tramadol 10+ I have oramorph 14+ is a hospital trip for me.

It's worth knowing that if you have exhausted all your pain relief options to no effect and haven't taken paracetamol, if you can, you should. This is because paracetamol works like a stepladder for other Medications enabling them to work better.

A doctor in A&E told me this when I had gallstones, Because of my chronic pain I'm tolerant to most pain killers and they began to run out of options so started me on an IV of paracetamol alongside the morphine and entenox  (gas and air).

Coping emotionally with pain is a different matter. It's important to have a good support network and healthy coping methods. I'm lucky to have a good support network both at home and online. I also use journalling to express the anger, frustration and hopelessness that comes with been in pain everyday. I did a post on emotional self care a while ago, you can read that here.

Do you have any questions or tips on coping with chronic pain? Feel free to leave a comment below.

As always thanks for reading.

Laura :)

Managing Medications

Following on from this week's spoonie speak on twitter, I thought I would write about how i manage my medications.

I tend to have medication stashed in a few places so i don't have to move very far to get the medications i need when i'm not feeling well. This is usually things like inhalers and pain relief (also known as PRN medications) that i may need suddenly without much warning. I have some pain relief in a basket next to the sofa, some in a drawer next to my bed and some in my handbag at all times.

I keep the majority of my medications, splints, inhalers and spare pillboxes in a basket. This is so i can find them easily and the basket is easy to carry. It looks quite nice too.

I also have a weekly pill box set that has a separate box for each day divided into four sections, morn, afternoon, evening and night. This allows me to fill these up on a Sunday and then i have that day's pills ready to take with me wherever i go.  These pill boxes were from lidl in the UK but a quick search on something like amazon shows loads of choices. The Anabox ones look quite good but a bit pricey.

When I go out I carry inhalers, mild pain relief such as deep heat and freeze spray, moderate pain relief such as naproxen and emergency severe pain relief like tramadol and morphine. I also carry a mini first aid kit as i'm clumsy and poor Proprioception means i'm always bashing my fingers, hands, toes and feet on things.

Right, memory.....what memory......

I always forget to take my tablets unless reminded, I lose track of how many pills i've got and forget to put repeats prescriptions in. Finally i forget to refill my pillboxes. Thats where my medisafe app comes in. I spoke briefly about this in my last post about helpful apps. Medisafe reminds me when to take my pills, shows me which pills are due and can also keep track of how many pills I have left. You can also set it to remind you to refill your pill boxes on a set day. Plus its Free! Who doesn't like free and useful!?

Most pharmacys in the UK offer a repeat prescription service. This means that they will put your repeat in to your GP surgery monthly and you can then collect your medications from them. If you're housebound some Pharmacies will also deliver. My pharmacy will put my repeat into the GP and then collect the prescriptions, prepare my medications and give me a date to collect them. This makes it easier for me to make sure I have enough medication and means less anxiety about running out.

Do you have any suggestions to manage medications or questions, drop me a comment below.

As always thanks for reading,

Laura :)

Apps for managing health and wellbeing

As promised in my last post about fatigue with chronic illness I thought I would write about some of the apps I use to manage my health and wellbeing.

All the apps I have are on Google play, they may also be on the apple app store or similar apps may be available for non android phones.

So these are the apps I'm using at the moment:

 The two apps I use the most are Medisafe and S health:

Medisafe

S-Health

MediSafe is a pillbox app that reminds me to take my tablets and allows me to log extra, skipped or missed doses. You can also add a list of all your medications so you can add or remove them from your pillbox as you need them. It also has a measurements function:

But for that I prefer to use S-Health.

S-health uses my phones sensors and interacts with my sleep app to track my sleep, heart rate, Oxygen Sats, steps, water, exercise and weight. It logs it all and you can then compare trends across days, weeks or months.

To track my sleep I use android sleep. It tracks your levels of sleep, time slept and amount of noise during sleep. It also records noise during the night so you can listen back and hear yourself talking about the unicorns or pick up any unusual snoring noises like sleep Apnea. Be aware that if you listen to white noise whilst you sleep it will pick this up instead.

To manage my M.E/CFS I use this app:

M.E Diary

You track your energy usage and symptoms for a set period of time and it gives you a functional ability percentage to help manage and prevent over exertion. I talk about this and how to use the percentage for pacing in more detail in my previous post.

Finally I find it really hard to rest, especially at night. For this I have various sleep noise, hypnotherapy and white noise apps. My favourite is this one:

Relax melodies

I hope there's something here that can help you manage your health and wellbeing.

Feel free to leave me Any question or comments below and as always thank for reading, if you like this post or any of my others you can follow me on Bloglovin or social media using the buttons on the right.

Thanks,

Laura :)

Physical self care - looking after your health and wellbeing when your already ill.

This post is following on from my basics of self care post yesterday, if you missed it you can find it here. Physical self care is probably the most thought of form of self care. It's also the one that needs adapting around flare ups/ relapses/ down days the most.

One day you may be able to do some yoga, eat 3 healthy meals, drink 8 glasses of water and take your meds.  Another day u may be able to take meds, drink some fluids and manage some stretches from your bed.

Both days count, your making a conscious choice to do something towards your physical health and wellbeing. This post isn't intended as medical advice and shouldn't be used as such it is just based on my experiences and ideas.

Move

Exercise doesn't have to be running a marathon. It can be as simple as stretching or moving whilst carefully engaging your muscles. I've found I can manage 3 mins of very basic yoga stretches 90% of the time. Just been in a swimming pool whether your swimming or not gives your joints a break as your weightless, just moving in water burns extra calories. On bad days stretching may help to keep the stiffness away and keep what mobility you have. If you have physio and can manage to do your exercises do those. Whatever movement you can manage to keep your joints and muscles going.

Gulp

Fluid levels are really important! Your body needs it to function. Aim to drink 2L a day, if you have POTS or some other condition requiring more fluid than normal you may have to aim for 3L. I find if I always have water on me everywhere I go I'm more likely to drink enough. fizzy drinks and fruit juices don't count as the fluid content is low and they are high in sugar.

Eat (If possible)

Food is hard for me. During a flare up of my fibro or ME/CFS I crave carbs and sugar. My mind tells me I need good nutrition to get out of the flare, anti inflammatory and energising foods etc. My body says eat ice cream and cookies for breakfast lunch and dinner.
I forgive myself if I go a bit mad but ensure I have at least had a proper breakfast and eaten some fruits and vegetables. Tomorrow's another day where I can try and make better food choices. I've found that ginger tea can help with nausea and peppermint can help with digestion and ease IBS symptoms.

Snooze

Sleep. What's that!!??

No seriously!?

Ok if your lucky enough to know what that is it 8 hours used to be the recommended amount. The typical advice now is 6-8 hours. Some people need less sleep due to their metabolism. I need about 10 hours as I struggle to enter deep sleep. 10 hours sleep normally gets me 2 hours deep sleep if I'm lucky.

It goes without saying lack of sleep can mess with everything, not just your physical health. If you really are struggling to get any sleep you may want to speak to your GP about some short term solutions to get some relief.

I don't know of any long term solutions to improve sleep but here's a list of things I've tried that have made some (if unpredictable) improvement:

*Clary sage and lavender aromatherapy
*kalms herbal remedy for sleep
*zoplicone (prescribed med)(v. short term as addictive)
*Cannabis oil (100% legal)
*Chamomile tea and radox bath.
*amitryptaline (prescribed med)

I also track my sleep using sleep for Android and I use relax melodies to help me get off to sleep. There are probably equivalent apps for iPhone and windows phone users.

If your sleep deprived but still cant sleep, schedule rest periods where you take some time to relax. This is especially important if you suffer from fatigue or are in a high stress environment/time.

How do you look after your physical health? Do you have any ideas or suggestions for physical self care? Let me know in the comments below.

As always thanks for reading, pop back tomorrow to catch the next post in the series covering intellectual self care.

Have a restful (if possible) day.

Laura :)

The basics of self care.

Spoonie self care

This week I'm going to be covering self care, I'm currently having a flare up of my ME/CFS so I'm writing this post at quite an apt time over several days. Todays post is covering the basics, over the week I'm going to cover each area in more detail with more ideas for adapting to good days and bad days.

I spent two years learning health and social care at college when I was younger. That taught me the basics of how to care, nurture and support someone's health and wellbeing. I then went on to spend 10 years working in the health and social care sector where I put this into practice again and again. I'm now going to apply that to nurturing my own health and well-being and hopefully help you to do the same.

So the acronym we were taught was P.I.E.S but I think an extra "S" is needed. PIES stands for:

Physical

This is nurturing your physical health, for those with a chronic illness this could be as simple as ensuring that you have taken your medication, eaten properly, drank plenty of water and completed  your Physiotherapy for the day. This can also include exercise (if able) and anything else that you may need to do to look after your physical health.

Intellectual

keeping your mind stimulated. Read or listen to audiobooks, learn new things, take classes, complete puzzles, write, anything that keeps your mind busy. Remember that your brain is a muscle and also needs exercising. Spoonie life can be boring, this keeps things interesting.

Emotional

This can be a tough one for a lot of people especially those with disabilities who can have mental and physical issues. Counselling, journaling, crafting, getting out of the house, been around nature, cuddling pets, taking a bubble bath and chatting to a good friend can all help nurture emotional wellbeing. Emotional ill-health is just as serious as physical ill-health and should be treated as such. There are symptoms which are called "psychosomatic" these are physical manifestations of psychological issues like hair loss and rashes when stressed or a twitch when nervous.

Social

Pain and fatigue can make you cranky, anxiety can make you want to build a fort and never leave but its important to maintain contact with the outside world, even if your fort is amazingly comfy and you need a "warning, approach with caution!" sticker on your head. This doesn't have to be going to a massive party and talking to everybody you see! It can include social media chats like #spooniespeak or @spooniecult on twitter, support groups on facebook, having a Netflix and pizza party with your closest friends or simply making time to call your family and friends for a chat once in a while. Of course if you have the energy and confidence to go to a massive party and chat to everyone go for it! Its about what's right and feels comfortable for you.

Spiritual (The added "S")

This doesn't have to be in the traditional sense of the word. This can be anything from prayer to meditation or even spending time appreciating nature or animals. Watching a sunrise or sunset can be a spiritual experience for someone. As hippy as it sounds whatever makes you feel at peace with the world can take care of your spiritual needs.

Self care should nurture each of these, it doesn't have to be all of them everyday, but as long as they are all covered in some way you can take some control and responsibility over your own health and wellbeing. You can do as little or as much as you can. Adapt your self care to how you are feeling and remember you are important make some time for yourself.

As always thanks for reading. Each heading is now linked to each post from the series.

Laura :)

Recovering after an operation

When you first come round from a general anaesthetic your disorientated, confused. You're not sure where you are as the last thing you remember is been wheeled into theatre and now you're somewhere else - the recovery room.

As soon as you open your eyes in this room it's the start of your recovery. When i came round i was in quite a bit of pain. I'd been given morphine in theatre but my high tolerance for opioids meant that they needed to give me more once i was awake. The amazing recovery nurse (i wish i had been awake enough to get her name) explained where i was and reassured me that she was giving me morphine through my cannula straight into my bloodstream but there were some issues with my oxygen levels so she was having to give me some bit by bit whilst she checked my breathing rate and oxygen sats. I Think i had an oxygen mask on to start with which was later swapped for a nasal tube.

I think after where am i and OW! came where's my husband?! i want my husband! i was disorientated and couldn't understand why he wasn't there. i was reassured he was waiting for me on the ward and knew i was out of theatre. Eventually i had come round enough to get my bearings, remember my own name and be able to think thoughts other than OWWW and what the hell have they done to me!? i was wheeled back onto the ward and reunited with my husband and mom who had been climbing the walls. (turns out i had been 4 hours, when i was supposed to only be 1 hour and a half).

I was drowsy on a cocktail of anesthetic and morphine and was fighting to keep my eyes open but the lovely recovery room nurse had positioned pillows under all my joints and wrapped me up all snug. The recovery nurse and the consultant anaesthetist had been quite knowledgeable about EDS and POTS and both were excellent at ensuring my joints were supported and cared for throughout my operation and recovery. I had some time with my family to reassure them i was ok and then i drifted off to sleep.

Before i went down i had been fitted with very sexy compression stockings, two hospital bands and two cannulas, one for fluids and one for pain relief. During surgery i had another cannula placed in my other wrist for the anaesthetist to use. My surgery had to be postponed by an hour as i hadn't been given enough fluids and due to my POTS i needed a litre of saline pumped in before they even started and another 2 litres during surgery.

I woke up a few times during the night and was promptly given more pain relief. My oxygen levels, heart rate and blood pressure were monitored frequently throughout and in the morning i was stable enough to be allowed home, YAY!!

 

So a bit more awake i waited patiently for my various tubes and cannulas to be removed and my husband and april to take me home.

I left with a souvenir though

 *****(if you have a delicate stomach stop reading now)****

As i was being wheeled back to the ward i was given a tube with my Gallstones in, in my groggy state i asked what do i do with these?! The porter informed me there's actually a place in London where they will embed them in your nails?! I really hope he was just messing with my drug addled brain!

Here are the little beasts that caused me all this grief:

There were two larger ones, the biggest been half the size of a 5p. I cant believe something so small can cause so many issues!

Anyway i'm glad to be rid of them! I have five wounds in my stomach, i won't post pictures of these as they have not got dressings, the nurses opting for surgical glue instead due to my allergy to adhesives in most dressings. 

Since been home i've needed regular pain relief and haven't been able to walk without assistance as i cant straighten up yet, too much swelling, bruising and fluid around my wounds, instead i've settled for been propped up on the sofa with lots of fluids and snacks. 

Once you're moving about a bit you can take your surgical compression socks off. These are to prevent blood clots. It's worth keeping these if you know you're going to be bed bound once you get home. Whilst laid up it's also important to keep moving your legs and feet occasionally to keep the circulation going also minimizing the risk of blood clots. You can't bathe straight after but once you're up to it you can shower. You cant drive for a week or longer depending on how soon you can tolerate wearing a seatbelt and manage an emergency stop. It will be about 2 weeks before you can try lift, bend and stretch, slowly!

I'm just hoping to stand up and move unaided about the house by the end of the week. Leaving the house may take longer. I still feel groggy even though i haven't had any morphine today. Someone told me it takes a week for the anesthetic to leave your body completely. I hope they are wrong as i don't like feeling so out of it.

Laura :)

Hospital grab bag

last week i wrote a post about preparing mentally (or not) for an operation or hospital stay if you missed that post you can read it here

This post is about the practical side of things when preparing to go into hospital or when you're needing emergency medical attention at short notice. This is where a hospital grab bag comes in handy.

A hospital grab bag is literally a bag you keep nearby, ready packed should you need to go into hospital at very short notice.

For me this came out of necessity, having frequent falls, faints and Supraventricular tachycardia attacks meant that i was needing emergency medical treatment quite frequently and without any time to prepare. Once you have spent a night on a ward with nothing but the clothes you're wearing and a phone, then had to have tests in day old underwear you take precautions so you're never in that situation again!

So here's what i have in mine:

Obviously this is just meant to last me 1 or 2 days, by which time friends or family would hopefully have brought me supplies and more clothes.

I'll start at the top, with my clothes. You may not think what you wear to the hospital or in hospital matters. I'm not talking about been fashionable but practical, although if you can do both go for it!

I have cotton yoga bottoms with a wide stretchy waistband. This is particularly good if you're having surgery around your abdomen as you can roll the waistband down or have it higher so it doesn't rest on any stitches, scars, wounds etc. Cotton is a good choice as your probably going to be sat or laid down for a while and anything with top stitches, seams or rear pockets may be uncomfortable. Mine came from asda (cheap and cheerful) but they're no longer doing the same sort of trousers, the closest i've found is these from peacocks. The same idea goes for your top. i chose my biggest, baggiest most comfortable cotton t-shirt. 

You may be wondering why there's a photo of my bra in there too (this obviously will not apply to everyone!) this bra is special. It has clasps down the front instead of back, completely removable comfort straps and posture support in the back. This allows access for ECG pads, central lines etc... and makes it easier to get on and off. You can buy various versions and brands of them from amazon (UK) here, some go up to 44E and come in black, white and nude. I also take a pair of slipper socks with me (the kind with little grips on the bottom) due to my dysautonomia my hands and feet are ALWAYS cold. Slipper socks are easier to pack than full slippers and you can wear them as bed socks.

Essential toiletries, dry shampoo as you may not get a chance to wash your hair for a while, face wipes, body/baby wipes to freshen up, i also take lip tint, spot cream, soothing eye gel, just because i'm ill doesn't mean i have to look dead! I also have some miniature perfume roll ons that i got ages ago, unfortunately the store no longer exists but the closest thing to them are the perfumes from lush here.

Next on the essentials is something i should have probably mentioned first, medications!!! The hospital will eventually give you your medications, if your admitted onto a ward, however this may be after a long wait in A and E or at the next medication round. If your medications are time sensitive, rare or needed quickly it's a good idea to take your own and any supplements you may also be taking. Just make sure you inform the nurses / doctors taking care of you that you have taken them. Its also helpful for the hospital staff if they know exactly what you've been taking. If you want to be super helpful pack your repeat prescriptions. 

The next thing i personally consider an essential is sanitizers. 

I take alcohol hand gel, a miniature surface disinfectant and some antiseptic wipes, for me this is because my immune system is lousy and hospitals are full of Germs. I know that hospitals have their own cleaners and ways of sanitizing things but it's for my own peace of mind, the surface disinfectant is good for spraying on toilet seats and tray tables before using. The hand gel is particularly useful in situations where you can't get out of bed to wash your hands before you eat or if you have to use a commode. I take antiseptic wipes as i'm allergic to plasters and micropore so usually have to try hold cotton wool on where they've taken needles/cannulas out. it can get messy.

Now onto the home comforts....

Its really hard to sleep in hospital, it's unfamiliar, noisy, nearly always too hot and they always wake you up nice and early to ask if you want a cup of tea - i love this so much I take noise cancelling headphones and an eye mask. This means i don't have to wait for lights out to sleep and the tea ladies don't bother trying to disturb me for tea or coffee. 

I also always carry a spare phone charger as my phone is literally my life line and some concentrated squash as i can't stand tap water, don't ask me why i, i don't know i just can't. I tend to put some in my water jug once it's filled up so i actually drink it and stay hydrated.

For some reason hospital air always dries me out i don't know if its air conditioning or the chemicals they use to clean with but i always end up with sore dry lips, sore throat and dry eyes, to counteract this i pack these:

Halls soothers for my throat, chewing gum to keep my mouth from drying out and to cover up nasty medication tastes, dry eye drops (just from asda) and some lip balm, this particular lip balm is an amazing brand called crazy rumours, its vegan and tends to work really really well. It also comes in lots of funky flavours like gingerbread, raspberry sherbert, amaretto and lots of other and this one's Mocha. I have a slight obsession with lipbalms and have some everywhere i go. You can buy Crazy rumours from lots of places but i get mine from Holland and Barrett. If you have Sjogren's or something similar these may also be essentials.

Lets face it hospitals are boring. If your conscious and "with it" enough it's always a good idea to take some form of entertainment. If you cant use it visitors may. I take an adult colouring book, colouring pencils, my beautiful journal (paperchase £12), some crafts and my phone. My phone always has at least one playlist on spotify and usually one or two audiobooks from audible. The Bloglovin app is always good as i can read all the latest posts from my favourite blogs. Just saying.... if you did yknow like this blog, i have a Blogloving button in my "follow me" section *hint hint*!

Finally to make my life and the doctors and Nurses lives easier i take a folder with my medical notes, repeat prescriptions and a map of the hospital. You can get what's called a medical summary notes print out from your GP that lists all your confirmed diagnoses, this is handy and is usually free.  If you have EDS i recommend getting a medical info card from EDS UK here. Not a lot of medical professionals have a good understanding of EDS and how to manage it. These cards explain the condition and warn medical professionals what to look out for and how to treat someone with EDS without putting them at unnecessary risk. If you don't have EDS or are curious what it is click here

This all fits quite nicely into my anna smith purple skull laptop messenger bag, its quite tatty now as i used to use it for university and then as my laptop case but i still love it. It sits just inside the bedroom door and my family and friends know where it is so anyone with a key can just grab it for me. I've asked paramedics to grab it before they wheel me away to hospital and they have been quite happy to do this as the folder also makes their lives easier.

continuing the theme of practicality, if your heading into hospital for a planned stay or op make sure you have planned for the big stuff, it sounds silly but make sure you know how your getting to the hospital and how your getting home. Having plan A and plan B for getting home and to the hospital may also be good. some things to think about:

* will you be well enough/ alert / safe to drive yourself?

* will you be able to use public transport?

*if you have a ride is there someone else that could also give you a lift if anything happens to plan A?

*Do you know if you will be travelling with any equipment aids / medical devices etc?

*have you got change for the car park / blue badges

When you get home will you need someone to take care of you, have you got enough food/ water / meds to last if you cant get out to the shops. Do you have a plan B if your stay ends up been longer than anticipated, have you got someone that can babysit / pet sit / house sit if you need it?

Lastly going into hospital is never pleasant, i dont think its supposed to be but with some foresight and planing it can be bearable.

I hope this post has been helpful. If you think ive missed anything important or have any suggestions / questions just comment below. If your reading this as your anticipating a hospital stay i wish you a comfortable stay and speedy exit!

Laura 

Sending spoons

pre operation anxiety

I got a phone call this morning that I've been dreading,
Its Ipswich Hospital here we can fit you in next week for your operation.

Now I am only having my Gallbladder out which isn't a big deal to most people but its my first operation that I will be able to remember. I'm especially anxious as I was originally told no one would do the operation due to my arrhythmia that it would be deemed too risky to put me under a general anaesthetic with such unstable blood pressure and heart rhythm. Despite this the consultant anaesthetist said he would do the operation. Even as I was having the pre-op the lovely nurse was telling me that she doubts they will go ahead.

Well they obviously decided that they could minimise the risks or the benefit outweighed the risks. So I now have less than a week (4 days to be precise) to prepare myself, ensure I wont need to go out for anything as I wont be allowed to drive for a week and I have thought everything through. You see the only way I can control my anxiety is to plan! Planning gives me the false but slightly comforting impression that I somehow have control over what is happening, it also gives me something else to focus on.

No doubt while I'm recovering I will be making lots of things so check back next week for some posts in the craft section and new products in my Etsy store.

I keep telling myself that I'm been daft as so many others have to endure much worse and far riskier operations and I wonder if everyone gets pre operation anxiety beforehand or after so many operations do you become immune to the anxiety and treat is as a normal occurrence?

Does anyone have any tips on overcoming the pre-op nerves, if so leave me a comment below.