Tuesday 28 September 2021

Living with chronic pain - Pain Awareness Month

I've lived with being in pain for so long now that for me being in pain is normal and I've forgotten what it feels like to not be in pain. Pain as a symptom is a key component in all of my physical chronic illnesses. I experience many different types of pain including joint pain, neuropathic/nerve pain, muscle pain, headaches and migraines, bladder pain and gastrointestinal pain. Then there are different types of pain that I feel - a dull ache, spasms, cramps, tingling pins and needles, a sharp stabbing sensation, griping, throbbing, and crushing, head pain during a migraine to name a few. Sometimes my pain is just there in the background other times it can be an acute onset of pain for example due to a joint dislocating.

One of the big problems when it comes to pain is the with my neurological disorder, FND, as it is a result of the nervous system not working and a fault with the brain's messaging system in my brain the signals for pain remain switched on to the max even when there may not be a reason for me to be in such high levels of pain. I then experience a wide range of chronic and acute pain on a constant basis for all sorts of reasons as pain is one of the key symptoms that come with my different illnesses which doesn't help the the mixed up pain signals that comes with my FND. This means that I really have to be on-it with managing my pain utilising skills such as distraction, mindfulness, using my hot water bottle/heat pad, my acupuncture pen, TENS machine etc. I always try and use pain relief medication as my last option and then I will slowly step-up what I take, the only exception is in the case of severe acute pain where I need to take some sort of pain relief immediately.

Living with chronic pain can be hard especially on my bad days as I'm wanting to distract myself from the pain but I'm unable to do so. As well as that often when I've over done it or 'done a big thing' this will trigger my PEM/PENE* which will flare-up my pain along with my other symptoms.

Illustration of a woman inside a box with her arms and head sticking out the box. The box is labeled fragile. Text reads 'be gentle with me'.
Chronic pain can also be pretty unpredictable and I can never plan for when I'll be in pain beyond my baseline everyday level of pain. The question of how much pain I'll be in and for how long I'll be in pain is something I will never know. I take various different medications to help manage my pain. I prefer to use the term 'pain relief' as that is what medication does, it doesn't kill or eradicate my pain, only bringing me a level of relief so that I am to a certain degree able to function and get through the day and the pain despite being in pain. 

It's hard to try and comprehend to explain to others including medical professionals, even those in my pain management team what it is like to constantly be in pain. Constantly being in pain affects me a lot, not just the physicality of being in pain or waking up at 3am with a raging migraine or having my bladder spasming so bad that I'm double bent and curled up crying struggling to syringe up some pain relief and turn on my heat pad. It's the emotional impact of being constantly in pain that I feel wears me down the most because the pain is so relentless and you become 'sick and tired of being sick and tired'. Those are the difficult days when you know you're 28 and you wonder if this is it for the rest of you life. Other days I feel more hopeful and able to cope with my health problems and associated pain.

I've found my appointments with the hypermobility pain team helpful and what I've learnt in these sessions I can apply to my other illness a little and hopefully (or one day) I'll see a neurologist from the migraine clinic which I'm really will happen (my referral is somewhere in space due to the pandemic). In the past I was under a local pain management service but they were as helpful as a chocolate teapot! My other symptomatic pain from my other illness and co-morbidities are also slowly getting sorted.

I know the pain will always be there to some degree but it's learning to live with an manage it. I know I will have my difficult days when I feel like I can't cope. Planing, pacing, activity management and regular rests help me to keep on top of my symptoms including my pain but it's journey to learn how to live alongside chronic pain.

*PEM - Post Exertion Malaise // PENE - Post Exertion Neuro-immune Exhaustion

Tuesday 21 September 2021

Craft tutorial: Zig-zag card

This month's make is a zig-zag card. You could make this as a mini scrapbook to give to a friend with scrapbook elements such as photos and things like ticket stubs etc. Alternatively you could use a co-ordinating card making collection to decorate your zig-zag card. In the photograph below ⤵︎ of the zig-zag card I've made I've used a co-ordinating scrapbook collection that came with co-ordinating papers, elements and stickers.

Difficulty rating: ★ ★  ☆ 

What you will need:

  • 3 pieces of card (around 300gsm to give your card enough stability)
  • Precision paper trimmer
    • If you don't have this you could use a ruler and craft knife on a cutting mat
  • Scoring blade on your paper trimmer
    • If you don't have this you could use a scoring board or a ruler and scoring tool
  • Ruler
  • Pencil
  • Scissors
  • Eraser
  • Paper creaser/boning tool or a ruler will be fine if you don't have one
  • Medium thickness (around 1 or 1.5cm) double sided sticky tape
  • Glue - quick drying craft glue and also a glue stick
  • Things to decorate and embellish
    • Patterned, plain paper and special effect paper
    • Washi tape
    • Stickers
    • Die cut elements - bought or ones you can make yourself
    • Card toppers
    • Stamps
    • Sentiments - stickers, stamps, die cut, card topper ones etc
    • Scrapbook items
    • Plus anything things else you would like to use
For this card made for the tutorial I First Edition 'Paper Flowers' paper pad and the Sizzix mixed effects gold card and some brown kraft paper. I also used a 'hello' die cut and a Sizzix flower die cut as well as a border and some sentiment clear stamps with black ink and finally some small 3D butterfly card toppers.

How to make your zig-zag card...

Step 1

You your paper trimmer with your first piece of card cut a piece of card 15cm in hight and 21.5cm in length

With your second piece of card cut it 15cm in hight and 20cm in length

With your third piece of card cut two lengths of card ⤵︎

  •     One will be 9cm in hight and 19.5cm in length
  •     The other will be 9cm in height and 18 cm in length    

Step 2

With the 21.5cm long piece of card score at 10cm, and 20cm - this should give you two 'pages' of your zig-zag card and a 1.5cm strip for your double sided sticky tape to attach the second piece of card (but don't join your two pieces of card just yet).

With your second piece of card score it in half at 10cm.

At each score line crease each line down using a paper creaser or boning tool if you have one alternatively you could use a ruler.


Step 3

With your first strip of 9cm by 19.5cm score at 5cm, 9.5cm and 15cm

This should give you a 5cm page, two 6.5cm pages and a 1.5cm strip for you double sided sticky tape.

With your second strip of 9cm by 18ccm score at 5cm, 9.5cm - this will give you two 6.5cm pages and a 5cm page

Crease down each score line.

Step 4

Put your double sided sticky tape on the 1.5 cm strip on both the main page and the inner 9cm piece of card that has a 1.5 cm strip which you will later piece together.

Step 5

On your two main 'pages' of card measure out in the centre the area you will need to cut out - this will a 5cm by 10cm rectangle with a 2.5 cm border around (see photo).

Using your precision paper trimmer, or if you don't have one you could use a craft knife on a cutting mat, cut out these two inner rectangles. These will be used to thread in your inner zig-zag pages.

Step 6

Join both the bigger pieces of card together; (this will help you work out the front and back pages). Make sure that you line up the join just right so that it easily folds but theres no lose gap on the 1.5cm strip.

Decorate the front and back pages - this is the side of card behind the page that doesn't have a rectangle cut out of the middle (see photo below ⤵︎ ). This won't be seen when your zig-zag is displayed but I find it nice to do this for presentation for when the card is folded up.

* Note: Ensure that you decorate each page correctly and the right way up.

So I've now decorated the front and back pages of my card ⤴︎ I've left the back page plain for me to write on for when I send this card to a friend.

I've used a stamp sentiment which says 'Butterfly Wishes & Flower Petal Wishes' and border at the bottom of the card. I've also used brown kraft paper, paper from the First Edition 'Paper Flowers' paper pad and the 3D butterflies (which were a gift) from HobbyCraft. 

You might be able to see in the photo how and where I've joined the two pieces of card together. The 1.5cm strip with doubled sided sticky tape on joins on the back of the card.

Step 7

Join your inner insert zig-zag pages in the same way as you did in the previous step.

Decorate the four inner 6.5cm by 9cm pages and the two end 9cm by 5 cm pages.

Step 8

Decorate the 4 pages - one the two pages with the cut out frames you can use your precision trimmer to make a frame or you could cover the page then flip it over and use a craft knife on a cutting mat to cut the centre piece out. Alternatively as shown below you could make 4 strips of card to fit the frame and affix them around the edge.

Step 9

On the inside end pages of your card measure out centrally a 5cm long line 3cm from the top and another from the bottom. 

This will be where you affix the two 5cm end pieces of your inner zig-zag - it's important to affix them centrally as it will ensure that you can close your zig-zag card (I've learnt this from my own mistake with making this card).

Step 10

Once everything is decorated and dried thread your inner strip through the two cut outs.

Affix both ends of the inner strip to the two end pages ensuring they are lined up and central (you may want to use an eraser to get rid of the pencil line). Let it dry and...


Tuesday 14 September 2021

Living with limited energy

When you have a chronic illness like M.E which limits how much energy you have it does have a massive affect on your life and how you adapt your life to live in the slow lane. How much energy you do or don't have is very individual from person-to-person depending on their illness. For me my M.E is classed as being severe so generally because of this I have to make the most of what little energy I do have each day and this varies day-to-day depending on if I'm having a good or bad day and other factors such payback from something I've done. What little energy I do have is very precious to me so I have to be very careful and cautious as to where I spend and spread out my limited levels of energy. Since I became ill over this time I've learnt how to live with limited energy and how to best manage the energy I have each day.

What many people don't realise is that everything takes up energy from getting dressed, brushing your teeth, washing, watching a TV program, reading,  listening to music, playing a game on your phone, any form of exercise. It isn't just physical activities that take up energy but mental activities too, even maybe something that brings up strong emotions may exhaust you.

teal background with white text reading being sick is exhausting on top of exhaustion this quote s by That Thing They Call Recovery
Like for most people with chronic illness/disabilities including myself my days are ever fluctuating and I experience good and and bad days. Depending on if I'm have a good or bad day this dictates how much energy I have and even within that I don't have a definitive good/bad day. I have great good days and okay-ish good days then I have my better bad days then my bad days where I'm crashed out in bed and really struggling. As a result I never know how much energy I'm going to have on any given day though my better days I will have more energy compared to my bad days where my energy levels will be depleted. 

This makes life pretty difficult as I don't know what kind of a day I'm going to have. Sometimes I can predict that tomorrow won't be so great if I'd done something that day that pushed my energy levels to it's limit but how bad the next day will be is a total unknown so it's hard to prepare for dealing with the following day.

Life with limited energy, whatever has caused that, is a challenge. Energy becomes something precious that you want to hold on to and you have to spend it wisely. This links in with Spoon Theory if you've ever hear of that?

I've found that regular rest periods throughout the day help keep my levels in check. Unfortunately reseting doesn't restore or restock my energy levels but it gives my body and mind opportunities an opportunity to pause which I find is much needed and I find the routine of alternating activity and rest periods help keep my energy levels in check, this is what I call my Daily Plan. Each day I have one main activity which I use my energy on doing; yesterday wasn't such a great day so my main activity yesterday was watching an episode of a boxset I'm enjoying. On a good day however I have more energy to do a bigger main activity. - I hope that makes sense? 

As well as my main activity I have low-level activity periods where I do activities that don't take up as much energy as well as spending my energy on washing, getting dressed, brushing my teeth, doing my hair - all the basics really which I do with the help from one of my PA's which make tasks easier and reduce my energy levels from crashing.

It's a very careful balance. Some other tools I've found helpful is pacing and activity management which is where my Daily Plan come in. Finding your own personal baseline is really important too, this generally involves working out how long you can do an activity for before you're energy levels drop and other symptoms flare-up. This baseline is different for everyone and may vary depending on the activity as well as if you're having a good or bad day.

My main advice to conclude this post is to see if you could do some work with an Occupational Therapist as I did to help you put together something like a Daily Plan. Take regular rest breaks; stop before you flop aka don't overdo it. Work out your baseline and put on a timer when you do an activity so you know when to stop. Learn about pacing and activity management including the traffic light system - Sickman Communications © have a great Pacing Pack which I have and I've found it so helpful including the traffic light post-it notes to plan my day and the Pacing book which taught me everything I needed to know about pacing. Write to-do list, this could be on your traffic light post-it notes, or on a list pad or on your phone (I love the reminders app on my phone). Also break tasks down so if you have laundry to put away do it in small stages, or ask for help - it's okay to ask for help; a helping hand can often save you some precious energy. Prioritise where to spend your days energy; if you're having a bad day it's okay to do very little - listen to your body. Finally since I've become ill I've learnt that things can be left to do the next day or week (unless it's super urgent and important).

Tuesday 7 September 2021

More than just a bad headache! - Migraine Awareness Week 2021

This week is Migraine Awareness Week. Alongside all the other symptoms that I have from my different illnesses living with Chronic Migraines (which affect around 2 in 100 people*) is something that I've just had to learn to live with as challenging as it can be.

"Migraine is a severe and painful long-term health condition that 1 in 7 people live with" - The Migraine Trust

I have roughly 17-20 migraines a month but they vary so much. One day I may have a bad migraine where I curled up in bed in the dark feeling so nauseous and unable to move and that may only last a few hours or I might get a more mild/moderate migraine that lasts for several days, or it could be the other way around. The unpredictability is hard as I know when I've got a migraine coming on but how bad it will be and how long it will last for is totally unknown.

There are different types of migraine; I experience Migraine with an Aura (which affect 1 in 3 people who experience migraines*) so I experience a visual aura or hallucination (nothing like a psychotic hallucination). This visual aura may be something like feeling like a light is being shone in my eyes or I will see little white and black dots like fireflies flying around. For me my migraine aura carries on into main migraine stage so I will have the aura alongside the headache pain stage which can be horrendous sometimes when the two symptoms are there side-by-side.

As well as experiencing Migraine with an Aura I also have experienced a rarer type of migraine which are Hemiplegic Migraines - thankfully I don't experience these very often and they where quite terrifying when I first had one. Down the right side of my body it goes numb and tingly and my speech slows down and slurs alongside the headache pain; to some it may look like a stroke but the symptoms dissipate after a few hours.

The 5 stages of a migraine

I take a medication called Sumatriptan at the start of a migraine. There is preventative medication but my GP wasn't sure what was okay to be prescribed to me due to the complexity of my different illnesses and the medication I'm on. I did get referred to a migraine clinic but due to the pandemic I got a letter to say that they're not seeing any new patients - that was around 18 months ago ad I'm still waiting and I have no idea where I am on the waiting list so I'm unsure how much longer I'm going to have to wait to be seen. I'm so grateful to have access to free healthcare but when you have a migraine most days you just want the problem to be sorted.

Difficulty is access care and medication is the campaign by The Migraine Trust for this year's Migraine Awareness Week.

With my milder migraines I have learnt to function in a limited way and I do plenty of things to help when I have a migraine. Medication obviously - my migraine medication and also pain relief. I also find laying down in a dark and quite room helps. I've also bought a koldtec™Halo headband which I find really helpful. Inside it has pockets for reusable icepacks and it helps a lot and it is something that I would recommend.

I do have triggers for my migraines such as certain foods for example garlic, wheat and gluten. I also find that I get migraines when I've visually overstretched myself such as reading lots of small print (so reading I now find difficult) or if I've been looking at a screen for too long. I also get migraines when I'm tired or when I'm unwell (like normal people unwell or when my chronic illness have flared up). Another trigger is when it's my time around of the month though this is a little erratic so I don't have a clockwork monthly week-long migraine. Tiredness or feeling exhausted is also a trigger (so having M.E doesn't help!).

Having Chronic Migraines means that I'm sensitive to light so I wear tinted lenses to dull the light I'm seeing though my glasses. I also find that I can be sensitive to sounds and smells. My migraines also leave me feeling nauseous and I have a lot of headaches alongside the headache pain part of a migraine. All these symptoms overlap with my other illnesses so it can be hard to know what is causing what symptom or sometimes my symptoms will be like dominos trigging off one symptom after another resulting in things like migraines.

Organisation & Helplines

➜ The Migraine Trust - *statitics from this organisation
        ☏ Helpline

➜ National Migraine Centre - About migraines