Insomnia

So it's 1.09am and I'm still wide awake. It' one of the stranger symptoms I have and it always perpelxes me that I have the symptom of chronic fatigue alongside insomnia. How weird is that?!

Some days I can barely lift my head because I'm so tired but come night time I can't nod off. Other times I can just sleep and sleep and sleep.

I've literally tried everything at bedtime. Even my nighttime medication has no effect which I find frustrating, especially when you hear of how tired it makes others sleep at bedtime. 

Sometimes I can't sleep for different reasons - pain, struggling to get comfortable and overthinking being the main culprits but other nights, like tonight, there is no reason, sleep simply just doesn't want to come to me. There are nights when I'm physically exhausted but mentally I can't drop off and sometimes its the other way round.

How can I have chronic fatigue and yet have insomnia at the same time - it just does't make any sense?! I try my hardest not to nap during the day time in the hope that will entice sleep to come but not, my body and brain just won't have it. I also try other sleep hygiene stuff too but sleep still won't always happen. 

Maybe I'm trying too hard. Maybe I should just snuggle up in bed and but on the TV for the background and wait for sleep to come to me?

Update:

It's now 2.43am and I'm still awake, but feeling sleepier (yay!)

Thinking of doing a post with some positive sleeping tips later today (aka the it's not stupid o'clock in the morning).

Despite the insomnia I am feeling gratitude for:

• Having my own bedroom and a safe place to relax and rest in
• My DVD player with Chicago Fire playing
• My laptop

Just. Keep. Going.

I've not been having the best few days emotionally wise if I'll be truthfully honest. I've been struggling with my mental health but the pressures of chronic illness - dealing with pain and fatigue along with al the other symptoms and on top of that struggling with basic tasks has been weighing on me heavily too. 

Yesterday I met with my nurse from my care agency who's been doing a lot of advocacy work on my behalf; trying to get things sorted but we're both feeling frustrated. We feel like we're getting somewhere, like that meeting with A&E last month but since that meeting nothing has happened and we desperately need and Ambulance and A&E Care Plan put into place. My GP is also dragging his heels too, such as not responding to the countless phone calls and letters my nurse has sent to him, which is also frustrating and I have yet to hear back from the email that I sent to my rheumatologist almost two weeks ago. I also have on my to-do list to email my neurologist. My nurse has now suggested the idea that we see my local MP to explain how lack my care is from both the health angle and with social care too and see if that will get us anywhere?

I don't want to go into too much detail but living with mental and physical illness is draining and when you have a lack of a support network around you the isolation plays on you. Sometimes you wish that people could spend a week, or even a day in your life. The mediation regime, the pain, the struggle to get up, dressed, the brain fog clouding your brain, the isolation etc.

'Fight Song' by Rachel Platten is one 'Just. Keep. Going.' songs that I put on when I'm struggling so I thought I'd add it to my blog in case any of you need a little reminder to hang in there.

Today I am feeling gratitude for:

• Music
• The support being there when i'm in crisis
• Medication
• My Bluebird nurse
• The health that I do have
• The NHS

Pacing

Pacing is a key part of life with chronic illness and it's easier said than done. You can set out at the start of you day a nicely planned out pace day but as usual things like fatigue and pain have other ideas. Pacing is particularly important when you have an illness which involves chronic fatigue or persistent pain to try to prevent getting to a 'crash point' where functioning becomes difficult and to try and lesson station like Post Exertion Malaise (PEM) and levels of pain and flare-up of symptoms.

This was today's nicely planed out day. I used my Stickman Communications © Pacing Pack as a handy tool to pacing my day out. Green are easy tasks, orange are okay tasks and red are challenging tasks.The idea is that following a red or orange task you take a rest or green task. The visuality of my day laid out like this helps me plan out my energy and spoon count so I don't get to 'crash point'.

However, like I said, chronic illness has other ideas and its okay to change your nicely planned out day. I didn't do my email sorting today as phone calls to the Pain Clinic, Patient Transport and more excitingly booking my tickets for Harry Potter Studios took up more energy than I imaged and time had flown by and I hadn't yet had lunch so I got myself a snack and to do some physio exercises and then forced myself get to the sofa and put the TV on the get a rest. After a couple of programmes I was nodding off so took a nap on the sofa. The next thing Dad and Mandy was coming home and I'd been asleep for a few hours - maybe I should have scheduled in a nap? So the afternoon's plan went out the window and no tidying got done. My body just simply needed to sleep and rest, and that's okay.

It's strange as for most people making phone calls is an everyday mundane task yet for me, like today and I'm sure other out there living with a chronic illness it can be very tiring thing. And I think I' having some PEM still from Tuesday's seizures and A&E visit still?

I do feel a little bit annoyed with myself as I wanted to get some tidying up done but like with chronic illness is unpredictable and far too often your mind and body develop other ideas. But I think a learning opportunity today is to plan naps into my schedule and maybe move my magnets around more to meet my body's changing needs as the day goes on and also to not be disappointed when I don't get everything done that I want to get done.

Learning to pace oneself is hard and an evolving process and takes a lot of skill. I'd recommend using the traffic light system, even if its using a red, orange and green pen on your to-do list as I do. I'd also personally recommend the Pacing Pack fro Stickman Communication © in it you get a magnetic board kit, pacing stick-it notes and a pacing guide 'Getting the Best out of Life'.

Handy Links:

The Mighty - Pacing Yourself Throughout the Day With Chronic Illness  

Pacing - Action for M.E. 

Quick Guide to Pacing for CRPS and Persistent Pain 

How to Get More Done When You Have MS: Pace Yourself! 

Pacing and Goal Setting 

What I miss from before I got ill

 

This is quite a sad post as it's about loss and what I have lost to illness. Illness has take a lot away from me and although I have gained so much since becoming ill there is still a lot of loss.

I miss he freedom of dance. Now every step is cautiously calculated, my balance off kilter, not longer the flexible self I use to be instead my hypermobile joints just sublux, dislocate and cause pain rather than grace and beauty.

I miss horse riding and the exhilaration of being in the saddle and taking brave new steps like jumping over a new height and being at one with the horse - even just spending time with horses, grooming them and putting on their rugs (or pj's as I called them).

I miss my independence; now being alone causes anxiety and fear. I used to get on the train to see friends and volunteer in different parts of the country. Now I'm reliant upon having someone with me to ensure I'm safe.

I miss University; studying to be a nurse; having a purpose and goal in life. Now I'm the one being cared for and having little reason to get up in the morning. 

I miss being able to read books, even ones in adjusted text; now i can barely make it through a few pages without loosing concentration and forgetting what it is I'm reading.

I miss volunteering and feeling like I'm making a difference in the world. I used to do so much work - travelling down to London for meeting, conducting research, pilot projects. I did recently start volunteering at the local hospice, but my seizures put a hold on that.

I miss going to the gym. I do physio but I'm limited to what I can do at the home. To go to the gym would mean having to pay for a carer to accompany me and that's a financial pressure as I have to pay for my own care currently and although I get disability benefits (PIP) it doesn't come close enough to coving the full cost of having a disability.

 (one of my favourite ballet films)

The #MillionsMissing campaign aims to raise awareness for those with M.E. missing from the world due to their illness. Its is a campaign to raise better awareness and treatment for the with M.E.

What's with the spoons?!

Often you will find those with chronic illnesses or disabilities like myself referring to spoons and our spoon count, and no, we are not talking about how many teaspoons we have left in the draw.

The Spoon Theory is a metaphor and is a way of describing what it is like to live with a chronic illness or disability and its limitations.

Where it all started:

Spoon Theory was created by Christine Miserandio who has Lupus. She created Spoon Theory as a way of explaining other fine what is like to live with the condition.

Chronic illness and spoons

When you have a chronic illness or disability you have a limited amount of energy - physically, emotionally and cognitively.

With Spoon Theory it gives us a way to measure the energy we have and how we need to spend it as we don't have to bountiful amounts of energy able bodied people have.

Everything we do throughout the day uses energy in some way shape or form - getting out of bed, washing and dressing, making meals, going to work or studying, sorting out your emails, reading a book, going to a doctor's appointment, socialising with friends etc.

Spoon Theory explained

Each spoon is a unit of energy and we have a set limit for the day. Each task takes a spoon away from this daily 'bank of spoons'. So for example:

Daily allowance = 15 spoons 🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄
Getting out of bed = 1 spoon 🥄
Making and having breakfast = 1 spoon 🥄
Getting washed and dressed = 3 spoons 🥄🥄🥄
Going to work or university = 5 spoons 🥄🥄🥄🥄🥄
Picking up a some groceries = 3 spoons 🥄🥄🥄
Making and eating evening meal = 2 spoons 🥄🥄 (because you're getting tired)
Total = 15 spoons 🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄

Now do you see that you've used up all your spoons and you have no spoons left for the rest of the evening so all you are able to do is lay on the sofa or go to bed early as there's not enough spoons to do anything else like meet up with a friend and you need that last bit of energy you have to get ready for bed.

Spoon Theory & Me

I find it a lot easier to say "I'm running low on spoon" rather than "I'm running low on physical, emotional and cognitive energy". (Though those who aren't familiar with Spoon Theory often give me a quizzical look wondering what the heck I'm on about!)

I was introduced to spoon theory by someone I knew at University who has MS. For a while I wondered what the heck she was on about when she kept referring to spoons and I even considered buying her a pack of teaspoons as I thought she didn't own many at home. Then one day I asked her "what is it with the spoons?' and then I was introduced to Spoon Theory and I've been using it ever since.

Links

The Spoon Theory written by Christine Miserandino

Happiful: What is the Spoon Theory?

Using Spoon Theory to Explain Chronic Pain

SaveSave

Stickman Communications and my Pocket Medical File

Stickman Communications © by Hannah Ensor

This is a fab company that I'd recommend to anyone with a chronic illness. Stickman Communications ©, run by Hannah Ensor who herself has Ehlers-Danlos Syndrome and PoTS - Potural orthostatic Tachycardia Syndrome, 

"Stickman Communications' Mission:To challenge the view that disability is a negative and scary thing, and to create a better understanding and acceptance of disability as a different normal instead."

Hannah has created a wide range of communication cards, badges, lanyards,stickers, clothing, zipper pulls, and other handy communication aids for a wide variety of illnesses and topics such as autism, diabetes, chronic pain, EDS and HSD, PoTS, seizures, mental illness, allergies, M.E./CFS, Dyslexia, Asthma, Tourettes, pacing, relaxations, Fibromyalgia, Chronic Regional Pain Syndrome, sleep and much more.

Using my Communication Cards I have put together my own medical file. (You can buy the dividers and sticky tags from fthe shop). In mine I have all my essential information such as a Name and Emergency Contact Card, alert cards such as for moving and handling warning professionals that I have fragile joints, then I have a sections of illness info cards which explain my different illnesses to readers, I then have a section on mobility explaining things like "Sometimes I fall. Son't worry, this is normal. I will wait, rest and get up when I am ready." And about my use of different mobility aids and how mobility problems aren't alway obvious. My last section is on communication as I can suffer form speech problems due to migraines or M.E. and because of my dyslexia too, and how I find it hard to follow fast verbal instructions and can struggle with concentration due to fatigue.

Some cards I have made myself, such as the ones explaining, and my Pain Score card, medication card and emergency/clinical contacts card.

My little book has literally been a lifeline at times and speaks for me when I am unable to do so and every medical professional who I have shown it to so far has loved it, from my carers to paramedics to my district nurse.

I also own a pack of the Stickman Communications © status squares which I have on my 'Differently Normal' lanyard that also use to communicate.  For example if I'm struggling or running low on energy. Each square is double sided and is a handy little communication aid that I'd also recommend to readers.
For Christmas I got my own "I'm recharging" hoodie which I love wearing.

Links and Contact info for Stickman Communications ©:

• Website: www.stickmancommunications.co.uk

• Email: admin@stickmancommunications.co.uk

• Telephone: 07717454648

• Facebook: Stickman Communications

Lovely Weekend

Weekends are usually hard, physically and emotionally. Physically because I'm usually exhausted from the week that has just been and emotionally because there is a void in the business of the week.
I've always struggled socially but since starting at the Therapeutic Community (TC for short) I've made one friend. That brings my total count of "friends" to two. Sure I have other "friends" like those that I write to and chat to online but my two friends are actual friends that I meet with and feel able to fully share my life with and I know are always there for me no matter what (even if it means being camped out in A&E with me).

So going back to my lovely weekend, on Saturday I met up with my friend from the TC for a coffee. Since she started at the TC we clicked and it made going to the TC much easier knowing she was there too - this was the friend that went to A&E with me the other weekend. So that was nice to get out the house and do something "normal' for a change - I say "normal" because hey, define "normal". Sure we met at the hospital for our coffee but it's close-ish to my house and it's one a good bus route for her, and the do Costa with soya milk and you can't really go wrong with that. To say it was 1pm it was fairly quite and in the cafe you don't really feel like you're in the hospital (unless you looked around and saw the Drs wearing their stethoscopes with pride, the staff in their varying colours of uniforms and patients in their finest NHS gowns with the added IV pole as an accessory to complete the look). 

Then when I got home I had a low FODMAP friendly late lunch and watched an episode of 'Hard Sun' with Dad - a drama we've been watching on BBC. After that I did some tidying of my room and then took a rest and wrote some letters.

Today, Sunday I made it to church this morning which was nice as I haven't been for a few weeks as since moving to the new building the heating was broke and it was too cold and it was making me ill. When I got back home I continued with the letter writing, then took a break and watched another episode of 'Hard Sun' with Dad then went back to my letter writing and then tidied up - usually when I letter write my bedroom becomes a stationary explosion. Then this evening another drama came on which is call McMafia which is also on BBC (BBC have one some good drama's at the moment - my favourite being Silent Witness). I also did some blogging (as you can probably tell) this evening which I'm enjoying. Oh, I've also spent the afternoon online chatting with a couple of people which was nice.

Now I'm just wrapping up and heading to bed. So all-in-all its been a good, sociable and busy weekend. Now I need to prepare for the week ahead which brings its own difficulties...

A day of stitching

So with my blog I want to share with you all my life and that means not just my chronic illness side of things. So today was a day off from the business of appointments and emails and chasing up phone alls to rest, breathe, drink coffee, listening to some music and do something creative.

Low FODMAP diet

Back in December I had a Gastro Dietician appointment. We decided to put me on a Low FODMAP diet to try and help with my IBS and other gastro symptoms. Initially I went wheat and gluten free then in the new year I started to Low FODMAP diet properly and so far it's going well and the 80% success rate seems to be proving itself. Already my abdominal pain and stomach cramps are easing and my constipation is easing which is such a relief.

FODMAP stands for: 

Fermentable
Oligo-sacchararides
Di-saccharides
Mono-saccharides
And
Polyols

These are foods which are poorly absorbed in the gut and include simple and complex sugars which are found in a variety of fruits, vegetables, wheat and milk.

Currently I'm limited to what and gluten free foods, rice/oat milk, dairy free (though I have a diary allergy anyway) and a handful of suitable fruits and vegetables. Things like apples, pears, peaches are out. Some foods I can eat but only in small amounts for example I am limited with soya products (like I can only have 125g of soya yogurt a day or 60ml of soya milk) and I can only have 18g of garden peas or sweetcorn.

It's been a huge adjustment getting my head around it all but I'm getting there.
"Food is made from of many components, such as proteins, fats and carbohydrates (including sugars). Some carbohydrates (FODMAPs) do not get absorbed in the small intestine. They pass along the gut to the large intestine where there are billions of bacteria. The bacteria ferment FODMAPs which may result in gas production and symptoms such as wind and bloating. Diarrhoea and altered bowel habit can occur due to an osmotic effect which increases the amount of water in the large intestine making stops loose or liquid. Reducing the intake of FODMAPs has been shown to improve gut symptoms in most people with IBS-like symptoms." - Reducing Fermentable Carbohydrates the low FODMAP way

There are 3 stages to the low FODMAP diet:

• Stage 1 Restriction: In this stage, you reduce your FODMAP intake by avoiding foods that are high in FODMAPs for 4 to 8 weeks as this period is considered long enough to identify if symptoms will respond to a low FODMAP diet.

• Stage 2 Reintroduction: If your symptoms have improved following FODMAP restriction, it is important to reintroduce some high FODMAP foods. This will enable you to identify which FODMAPs you are most sensitive to, as well as how much of a high FODMAP food triggers your symptoms.

• Stage 3 Personalisation : The long term aim of a low FODMAP diet  is to personalise your diet so you  only avoid foods that trigger your symptoms and you return to as normal a diet as possible. 

- Reference: Kings College London

To anyone with IBS that's affecting their daily living I'd definatly recommend asking your GP to refer to you to see a dietician to trail a Low FODMAP diet.

Links:

FODMAPs - Kings College London this is a great site to better understand the Low FODMAP diet and there's a great animated video on there too.
IBS Network - FODMAPs

2018, the year for Gratitude

Instead of New Year's resolutions one of my pen friends suggested choosing a word to incorporate into our lives, so this year I have chosen 'gratitude'.
So far I feel gratitude for:

1. The NHS despite it's flaws
2. Having two top consultants in my care team
3. My carers who make me feel me
4. My wheelchair which gives me independence and freedom
5. My pen friends who never fail to make me smile
6. My two best friends who stick by my side no matter what
7. Technology which keeps me connected with the world
8. My bedroom which is my even and space to recharge my batteries
9. My Dad who does so much for me

Cards for Warriors

Today I received some post from Cards for Warriors. It was a lovely surprise and made my day. 
Cards for warriors are team of dedicated volunteers all with chronic illnesses who send out handmade cards to encourage and brighten the day of those living with a chronic illness.

In my card it read: "Naomi, I hope this card fits you on a good day! Always remember that you are so much more than what happened to you! No diagnosed can take away all you have accomplished! I hope you never stop dreaming and doing what you love because I know you will do amazing things! You are a warrior and we are cheering you on!"

The second card read: "Hey there!! I hope this card finds you well! I am here to remind you that you rock! You are strong and brave - I am in awe of you! Keep your fighting spirit!"
Both card's messages were very personal and meant a lot to me. It reminded me that I am more than my illnesses and that within my limitations my anything is possible.