Fatigue with chronic illness and wristies

So since joining Conscious Crafties I've met some amazing talented people. I've also started to sell a lot of my Wristies so I thought I'd show you them. These are heat-able wrist warmers with optional scents made with real petals and flowers. I make them out of polar fleece so they are lovely and soft and hold their heat really well. They're great for arthritis, RSI, carpal tunnel, Raynaud's, EDS and fibromyalgia plus the occasional ache and pain. Now I've shown you these i'll tell you what they have to do with fatigue:

I'm making some today but fatigue is getting the best of me so all I've managed to do is pin them and make final cuts. Because fatigue will mean this post will take me all day to write I thought id write about fatigue.

Someone without chronic illness might think, or say: "what's the big deal? your just tired!" or "get some rest and you'll be fine!" That's the issue. no matter how long we sleep for we never feel refreshed, no matter how hard we rest fatigue will still hit us. After all we still have to eat, breathe, go to the loo, talk and try to have a life. All these things take precious energy when we have none.

 Our bodies are fighting our illness' so we start the day with less energy than a normal person and use more doing everyday tasks.

So what does fatigue actually feel like?

It isn't just been tired, it feels like having the flu or the fatigue you might feel after running a marathon. It is a bone aching, hard to move, hard to think, fighting the urge to fall asleep, nauseating battle. Sometimes this battle starts because we've done something like gone to the supermarket or had a day out, sometimes it starts because yesterday you did the laundry. It doesn't always make sense.

Todays battle is because I put the clean clothes away in the wardrobe and cooked a meal. That simple. I didn't run a marathon, I haven't got the flu, I didn't do an aerobics class. I put clothes on hangers and made a risotto from frozen ready prepared veg. You see the problem?!

How do we cope with Fatigue?

Luckily I can still function with the fatigue I'm experiencing today (otherwise I wouldn't be writing this), but it means that all other plans are off the table. Everything I can do from bed will be done from bed. If I have to move I will be using my chair, you see the side effect of battling fatigue is if you fight too hard you still lose.

If I don't take the time to rest today and use as little energy as possible tomorrow will be worse. At my worst with Chronic fatigue / ME I was working and I pushed through the fatigue to turn up at work and try to keep my job. After a while things got so bad I collapsed after trying to get dressed. Just pulling some clothes on was too much. After that point it took me 6 months of careful pacing and sick leave to get to the point where I could do one thing that took a large amount of energy a day, for me that was driving a short distance or going to the local store for some food.

I had to learn what used up the most of my energy and limit that. I had to learn to take rest breaks without feeling guilty and lazy. Most of all I had to learn to listen to my body.

There's a great app called MECFS diary.

I used that to log how much energy I was using. After a week it gives you a functional ability percentage. That percentage shows you what your limits are. I also used this app to see when I should rest. For every 1 hour of high (red) energy activity I scheduled 30 Mins rest.

I used AYME's functional ability scale available here (PDF) to work out my limits. I now flit between 60 - 70% instead of stuck at 20%.

How can you help someone with chronic fatigue/ME?

1. Don't get mad at them if their not able to do something

2. Don't blame them for their fatigue

3. Don't make them do things/ push themselves it wont help

4. Do Give them space to rest and pace themselves

5. Do try to help them by splitting activities into small chunks with time for rest in-between

6. Do support them when their overwhelmed, support is so important

7. Don't assume that if they did something yesterday they can do it again today ( we wish)

8. Do stay friends with them, they don't like having to cancel on you and they need your support

9. Make sure they have food and water within easy reach (we tend to neglect ourselves when fatigue sets in)

10. You've already done it by reading this post. Understanding how we feel helps you to empathise with us.

As always thanks for reading, I hope this can help in some way whether you experience chronic fatigue/ME or know someone who does. Feel free to leave any questions or comments below.

Next weeks post is going to cover the Apps I use to manage my chronic illness' and symptoms, until then have a great week.

Laura:)

Conscious Crafties

So this week I was fortunate enough to be accepted into Conscious Crafties.

The Chronic Comforts store has been set up, there's not much listed at the moment but its growing day by day. You can have a look here:

https://www.consciouscrafties.com/Crafties/chronic-comforts/

Conscious Crafties Is a lovely, friendly community of people with chronic illness' or people who care for those with Chronic Illness' to sell their crafts. It goes further than an online store. There's a supportive community where crafties can find support, advice and creative genius. It's all the brainchild of karen thomas a lovely lady and a spoonie  herself, here's what she has to say about why she founded Conscious Crafties:

How was the idea born?

Karen Thomas
Conscious Crafties Founder

Hi there, I'm Karen and after becoming sick in 2011 almost overnight, I found my way to various support networks. I noticed we all shared the same sense of loss, we'd lost friends (because not many stick around when you have to let people down at the last minute), some of us had lost jobs (due to being unreliable) and the biggest thing that hurt deep into my soul was the overwhelming loss of purpose, we all felt useless. I desperately wanted to make that better. So in 2011 the idea was born to create a community for everyone to showcase their talents in one place and give people a way of creating their own businesses. It was also a way for me to feel useful again, by using my skills to help others. Conscious Crafties is about empowering us all to be successful, tell our stories and meet new like minded friends who understand our struggles. I'm also hoping it plays a key part in changing the way Disabled and Sick people are viewed by the world. We can still contribute and are incredibly talented!!

 

My Beautiful Friend Sam

Conscious Crafties has been built in honour of Sam, my beautiful friend I met through sickness and our love of crafts. Her strong fight with Gastroparesis and POTS sadly ended in Oct 14. Heartbroken, I knew then, after years of thinking about it, the idea for us all to sell our crafts and skills within a supportive community needed to be launched, so it could help people NOW and give them hope for the future.

Karen has been so patient with me and has supported me to open my Conscious Crafties shop. The whole site has tidbits of advice at every stage and well thought out timesaving features all designed to save you some energy. Ive only been set up 3 days and im already making friends.

Once you list a product the "techy magic" on the site posts it on social media to get your products seen by a wider audience.

I've been amazed at the wide range of skills and talents there are, from artists to wood burners every kind of art and craft is welcomed. You can apply to become a Conscious Craftie here

Or buy something from a talented disabled person or carer here.

As usual any questions or comments just let me know below....

As always thanks for reading,

Laura :)

Banham zoo accessibility review

Following my camping trip, which you can read about here I thought I would write about my experiences at the zoo next door, Banham zoo.

 

Banham zoo was founded in 1968 and became a charity in 2013. It isn't the largest zoo in the UK but I found the friendly atmosphere and their dedication to conservation made it one of my favourites.

 

Its in the tiny village of Banham in Norfolk, UK.

 

 When you arrive your given a welcome pack which includes a map and a list of the feeding and talk times. The entrance gates are wide enough for a power chair and the reception is all on one level.

As you enter the zoo there is a map and signposts to the different animals. We noticed several first aid posts and help points. You can hire a mobility scooter for the day for £10 and they will safely store your wheelchair if you are swapping it for the scooter. I can't stress how helpful the staff are.

 

 

Most of the zoo is on level ground however the giraffe enclosure is up a inclining platform so you can get up to their height. For wheelies who self propel, I recommend going into the building at the Base of the giraffe enclosure and using the small platform lift to get to the top. From the top of the building you can then get to the platform and see the giraffes.

 

Some of the ground in the zoo is uneven so those using walking aids or with balance issues will need to be careful.

 

Most of the enclosures have some way of viewing the animals from a lower position, ideal for children, those who are shorter in height and people using wheelchairs. I got some great views of the tigers and snow leopards from these areas.

 

 

It may be unsuitable for those with severe visual impairment as there are only a few enclosures or attractions where touch or sound is used, there is no braille and some of the animals like to hide quite well! For hearing impaired all the talks are done with the use of a microphone system and a single person speaking allowing for lip reading or use of hearing aids.

There are several toilet blocks which include a disabled toilet. The disabled toilet at the Parrot Pavilion, the main restaurant, was a little on the small side but I was able to get my power chair in and transfer to the toilet. Disabled toilets had the standard radar key, lowered sink, grab rails and lowering rail on the right hand side of the toilet.

 

It's free to listen to the talks, see the amazing animals show and watch them feeding the animals. Also interactive events like meet a reptile and the amazing animals show are also included.

 

                        

They only things not included in the ticket price are the Skytrek high wire course and zorbing. The food is good but quite pricey so I recommend bringing your own food and drink. There are plenty of picnic areas.

 

It is possible to see the zoo in one day but for those low on spoons who can camp, glamp or caravan, I recommend staying at the Applewood countryside campsite next door and seeing the zoo over two or more days. If your staying at the campsite you can pay an extra £3 on the price of your ticket and revisit the zoo all week.

 

Ticket prices

(can include optional donation to their conservation charity. )

 

Disabled adult/child/carer

£11.45 (with donation) £10.40 (without)

Adult
£22.95 with donation £20.85 without

Children 3-15yrs
£16.95 with donation £15.40 without

 

Children under 3

Free

 

We really enjoyed it, even my grumpy husband loved getting close to the tigers and seeing them been fed. It is somewhere which taught me a lot about different animals, their endangerment and why conservation is so important, I would definitely revisit.

 

As always thanks for reading, any questions or suggestions leave a comment below.

 

Laura :)

Camping trip with a chronic illness

Earlier in the month I wrote about dealing with anxiety around unplanned trips as Preparing for anything with a chronic illness can be tricky. Even more so when it's camping.

 

I'm lucky I'm not going camping in the woods, I'm going to a campsite with level ground and disabled toilet and shower facilities. I needed somewhere with an electric hook up so I would have power to charge my chair. Obviously if you don't need electricity your experiences may be different.

 

Here's how I prepared;

 

My tent is amazing, its actually like a Tardis. It is huge inside! easy to put up and I can wheel straight in and stand up inside if I need to. It goes up in about 10-20 Mins with 2 people doing it (my husband and I ) even though I'm helping from my chair.

http://amzn.to/2c2IcDB

 

We got this up and had two cushioned reclining chairs, a table and a cooler inside the living area. We had power running into the tent with sockets in the middle so I could charge my chair and use my heated blanket.

 

My husband splashed out on a raised air bed for me so I can get up from it,  the bed has an inbuilt electric pump for super fast inflation and it deflates itself! magic! once the tent is up the very next thing to go up for me has always got to be my bed, so if I crash I have somewhere to lie down for a rest. This was really comfy to sleep on but with my husband getting up and down like a yoyo it did deflate slightly as the days went on, we just got the plug out and pumped it back up a bit.

We took a double duvet and pillows instead of sleeping bags as I'm quite claustrophobic and cant stand anything wrapped around me! My heated throw blanket is also a heated cape and helped when things got cold.

http://amzn.to/2cj7POk

 

I took my meds in my dosset boxes so they were easy to find and chuck in my bag if we were going out for the day. I also made sure I had extra tablets for pain relief, insomnia, IBS and nausea as the last thing you want is to run out or suddenly need some half way through your trip and have to wander around looking for the nearest pharmacy. I made sure I took anything I might need with me as I refused to have my holiday spoilt but something that could be relieved by medication. If your meds are high risk (codeine, tramadol, morphine, zoplicone etc) keep it on you in your bag. Also don't forget basics like Paracetamol, ibuprofen, antihistamines, bite relief cream and sun cream / after sun, antacids etc..

 

Before we went I researched where we were going, what was nearby and what id like to visit. I looked at where places where, did they have disabled parking, were they accessible, opening times and admission prices / costs. I knew we were a 30 min drive from Norwich which is excellent for shopping so I knew I wanted to go on a shopping trip. I also knew we were literally next door to Banham zoo and that I would want to visit but may need two days as during the day it was quite warm and tiring. I researched the shops I wanted to visit so I spent less time wondering around aimlessly and more time in shops I was actually interested in, knowing where they were also helped us to navigate a city we've never been to before without getting too lost!

 

Another piece of advice I can offer is to start preparing early, This is so you can take your time and pace yourself. Write a list out of everything you need, don't forget a spare outfit in case you get soaked, decide to have a head to toe mud bath or the weather drastically changes. Start sorting out what you need at least a week before you go, if you already have a tent get it out and put it up so you can check it for damp or damage and air it out, the same with any other camping equipment. This gives you at least a week to find another one or repair anything that's damaged. If you have pets check your designated pet sitter is still available and happy to take care of your babies. Make sure you stock up on pet supplies too.

 

Luckily nothing went wrong and I didn't need my plan B, but its always a good idea to have one. Have an emergency fund set aside so you can spend the night in a B&B or hotel If your tent gets blown or washed away. Also the weather is never guaranteed, have some entertainment for rainy days, board games, books, card games, if your adults with a dodgy sense of humour there's always games like cards against humanity and exploding kittens. :) The weather stayed nice for us and it only drizzled for about an hour on one of the mornings. Luckily I had a waterproof coat and it soon stopped.

 

I camp on campsites so I have the right balance (for me) between nature and home comforts. I didn't take my laptop. It was me, my husband and a phone that was it. We were away from our usual routines, work and environment and could relax together and enjoy each others company. That's the point of a holiday for me, getting away from everything and spending quality time together. I don't have to be staying in the Hilton for that and we both love nature. It was so quiet and peaceful on our campsite it felt like we were in a whole different world.

 

 

So How did I get on?

My husband was amazing and did most of the work! However the cold didn't like me very much, despite my heated blanket the cold at night caused me some issues and the last resort pain meds came out in full force.

 

Despite that I had a good time and came across very few obstacles. The disabled bathroom on the campsite was adequate but had a step into a shower and a grab rail that came down across the door which meant you couldn't use it to get over the step and onto the shower seat but once you were in you could put it down to stabilise yourself. I also couldn't fit my chair next to the toilet to transfer so I had to pull myself up, turn round and then lower myself down but I managed. I went shopping in Norwich which was hit and miss with accessibility, some tiny shops were more accessible than large well established ones, but I find that problem nearly everywhere in England.

 

We also spent quite a bit of time in Banham zoo which was quite accessible for those with mobility problems.

 

Check back next week for photos and an accessibility review of Banham zoo.

As always thanks for reading,

 

Laura :)

 

 

Review of Harry Potter and The Cursed Child

It was my 28th birthday on the 18th August and one of my gifts from my amazing friend/neighbour/carer was this book:

 

 

*******Spoiler alert *********

I was unsure how I would get on with it at first as I was aware it was written like a script and was in fact a play.

 

I finished it in 2 days and loved it! I loved how there were so many expectations placed on Albus because of who he was, just as Harry had found when he reached Hogwarts. I also love how there are similarities between the two such as Albus' sense of adventure and willingness to challenge the status quo and their loyalty to their friends. Despite this Albus is convinced that he is a disappointment to his father.

 

I love the awkward moments between Albus and Harry as Harry struggles with fatherhood. I also love the way these scenes are written as there is so much unsaid that you sense between the lines.

I was pleased to see that the main characters were back and had developed, grown in the time between books, with Draco still been an arrogant twat but mellowing as he goes through the struggle of been a 'single father' whose son is in danger.

 

What I also likes is that when the Time Turner took them back, the resulting changes seemed to answer the 'what ifs?' from the books. Questions such as what if cedric diggory wasn't killed, what if voldemort won and what if Ron and heroine never got together?

 

I felt that the final fight with Delphi could have been a bit longer as it all seemed to be over too quickly for me. The touching scene at the end with Harry reliving the moment he became an orphan this time with his family and friends by his side was almost a tear jerker.

 

There's something still creepy about voldemort saying "haaaaaarrry potteeer" even now.

 

This was a great read and it made me feel all nostalgic again, remembering my excitement at reading the original series and I hope there are more books to follow, I understand that this may not be what everyone wants, fearing that if the series was extended it would loose some of its 'magic'. (you see what I did there?:p) But I still love to revisit these character's and would like to continue seeing them grow and develop over time.

 

Now I need something else to get hooked into, any suggestions?

 

As always thanks for reading,

Laura:)

Unplanned trip anxiety!

I'm been brave this September.  I normally don't go anywhere without my trusty rucksack armed with all kinds of things to help me with heat intolerance, cold intolerance, pain, dislocations, asthma and more. Even with all that I Then have to know where I'm going and know where toilets, disabled accessible facilities are and have a plan B for everything.

I think this is typical for most with a chronic illness. Either that or I'm just an anxious control freak! It now comes naturally to me to go out prepared for almost anything my body can throw at me. This enables me to enjoy myself, relax and know that if anything happen I wont have to go running home or ruin the day.

All this goes out the window when I have to go somewhere I don't know. My dad has planned a suprise trip for me. It's a lovely exciting idea BUT it's left me quite anxious. I don't know where we're going. I've to turn up at my Dads house on a specified date and time and he will hand me information about where I'm going, a postcode for my satnav and booking information. All I know is its camping and its for 4 days.

I don't know how far a drive it is, if there's blue badge parking, how accessible places I may need or want to visit are. I don't know if there's pharmacys or doctor's nearby. I don't even know where I'm staying.

Will it be big enough for my power chair?

Will it have accessible bathrooms?
Will there even be somewhere to charge my power chair!?

Will I be able to make myself comfortable and give myself some self care if I have a flare up?

What activities will I be able to participate in?

Will attractions I want to visit be accessible?

I have to be brave and put trust in my dad that he knows my needs well enough to have thought of all this. But then there's the other issue its CAMPING- I'm extremely sensitive to temperatures, too hot my POTS doesn't like it, too cold my Raynaud's and Fibromyalgia doesn't like it. I cant exactly have air conditioning or heating in a tent. My air bed is not that comfy and I wont have a sofa to lay on if I'm having a bad fatigue day.

To tackle this I'm taking lots of pillows and blankets so I can make my own nest of comfy to crash in, this will also help if it gets cold. I hope the campsite has a pool so I can cool down if its too hot. Once I know where I'm going I can do some research and find some places to visit or activities I can do. Whatever happens its my holiday and I'm determined to enjoy it.

It made me wonder how many other spoonies out there have anxiety around unplanned / unexpected trips? Am I the only one?

Of course once I get back I will post about how I got on and how I survived!

As always thanks for reading,

Laura :)

Orthotics appointments and support braces

I'm not doing too well this week so please excuse the dodgy photos! If your in the same boat check out my series on self care.

Here's my experience with orthotics and support braces:

After been diagnosed with Ehler Danlos syndrome (hypermobility type) my next Physio appointment went a little differently. I informed her of the new diagnosis and she proceeded to check my joints for hyperextension. I never realised what my joints did wasn't normal until this point, apparently your knees are not supposed to bend backwards and your wrists aren't supposed to rotate 360 degrees : who knew?!

Cut a long story short my GP referred me to Orthotics for some knee and wrist braces.

At My first appointment the Orthotist asked me to hyper extend my joints and to try and walk ( I wobble at best even with a stick) and then move my wrists in all directions to see what was needed and where. He decided that I still had good muscle and joint control in my left knee but both wrists and right knee were quite bad. I was measured up and a second appointment was made.

At my second appointment I was given two wrist braces and a knee brace, the Orthotist showed me how to put them on and checked their fit and suitability.

This is a Medi knee support, its comfortable but refused to stay in place on me, it didn't matter whether I wore it over clothes or on bare skin it would always wiggle down and be really lose around the top. They have wedges on the side that can be removed if more or less support is needed over time.

These Beagle standard wrist supports were ok, they have a metal rod to support the wrist on the underside which can be removed so they can be washed. The only problem I found was that the pressure of the strap between my thumb and finger was too uncomfortable for me.

Because of the problems I had with this first lot of orthotics I had a follow up appointment and was given different wrist and knee braces:

Osso form fit wrist brace



Townsend knee brace

This brace was less comfortable and not as supportive but stays in place. I suppose there's no point having a comfortable supportive brace if it doesn't stay where its needed. The wrist brace is more comfortable than the last and has a cotton mesh on the inside making it breathable. It cant go in the wash but it feels much more supportive than my other wrist braces. These were more expensive so the Orthotist wanted to try me with the Osso one on my right wrist and keep the Beagle one on my left wrist rather than supplying me with one for both wrists.

So far so good. I tend to wear my knee brace when I know I will be wobbling about the house all day or not using my power chair and my wrist brace when I'm using my hands a lot like crafting, writing or when they hurt. I avoid wearing them all the time as I want my muscles to keep the strength they have but at the same time want to prevent any deterioration in my joints. Its a balancing act.

Any questions? What orthotics if any have you found useful? Comment below

As always, thanks for reading,
Laura :)

Check back next Sunday for my post on anxiety around unplanned events.