I'm back with a surprise

Hi all,
I thought I would explain myself. I haven't blogged since June and I have severely neglected the blog. I'm Sorry! I was rushed off my feet quite literally over Christmas and had too much on my plate then I got a big surprise......

Yep that's right I did four tests in total and still didn't believe it. Just after Christmas I'd visited the doctors with what I now know were pregnancy symptoms, to be told it may be Endometriosis and to come back after the new year for an ultrasound! I was convinced I was infertile.

On the 1st January, something- (call it divine intuition, a hunch or just bored curiosity) made me do a pregnancy test and lo and behold I was pregnant! I stated that I wouldn't believe it until I had a handful of positive tests and a doctor saying congratulations. By the end of the day I had all that and still couldn't believe it until my first scan.

That little blob changed everything!

 

My first trimester was god awful, I had to come off the majority of my medication cold turkey and overnight, I had nausea, vomiting, anxiety, insomnia, mood swings, sore everything and severe fatigue. I was even hospitalised due to my POTS skyrocketing out of control. There were times I could barely function as a human being let alone do anything else. Luckily this passed and I made it to 12 weeks with a lot of support from my amazing husband.

12 weeks

My second trimester was wonderful! the nausea and fatigue gradually wore off, suddenly everything wasn't sore anymore, my POTS calmed down I had energy to actually do things, I wasn't in constant pain and I began to enjoy been pregnant.

It was during this time that my business loan with the princes' trust was approved and I re-launched sending spoons, this time with a new name- Chronic Comforts. If your interested in the Princes' trust and what they do I wrote a post about it here.

Now I had an embroidery machine and was able to do much more. I've been concentrating on getting to know my other baby (a Brother Innovis F440E) and working on new products.

https://www.consciouscrafties.com/handmade-gifts/magical-unicorn-hoodie/

I'm now into my third trimester and the chronic fatigue, fibromyalgia and POTS have returned with vengeance. My joints are struggling and I'm doing daily physiotherapy and having monthly manipulation to put everything back into place. hEDS and pregnancy hormones don't mix! I still don't feel as bad as my first trimester but its really hard work for me now. On the Bright side I found out we are having a girl. We're naming her faith and I'll leave you with some of the more recent scan photos to show what a little cutie she already is:

20 weeks

28 weeks

 

As always thanks for reading and check out www.facebook.com/chroniccomforts for new products, links and news.

Laura :)

 

Bath bombs and taking a break

I didn't post last week as I had a very tough week both physically and mentally so decided to take a step back, utilise self care and do some craft projects that were just for me. If you want to know more about self care i wrote a whole series that starts here. I apologise for the not very photogenic photos but i'm still not 100%.

While i was having a break I made this beautiful dream catcher just for me:

I'm torn between making more and listing them in the sending spoons store or keeping it as a hobby just for me. What do you think?

To keep myself busy I've been making bath bombs to give as small presents for Christmas. I thought I'd share how to make them and what I learnt from my disastrous first attempt.

The recipe:

1 cup bicarb (baking soda)
1/2 cup citric acid
1/2 cup epsom salts (I use Dr salts eucalyptus muscle therapy salts)
1 tsp water
2 tsp essential oil (I used lavender)
3 tsp oil (I used coconut oil. If solid microwave for 20 seconds first)
Extras like food colouring, shimmer, sugar stars etc

1.Add all the dry ingredients together (add petals too if using) and mix well.

2.Add the liquid ingredients together, including the food colouring and shimmer.

3.Carefully add the liquid to the dry a drop at a time whilst stirring. If you accidentally add a bit too much stir quicker until absorbed.

4.Once all the liquid is absorbed you should have the consistency of wet sand and it should hold its shape when squeezed together.

5.Fill a circular mold a little bit over, (for a mould i'm using a christmas decoration featuring Olaf from frozen, you can buy proper moulds or even cut a tennis ball in half for a mould.

It's important to fill it quite tightly and make sure it's firmly in place.

6.push the two halves together and leave to dry. 

I put mine in the fridge for 4 hours to dry.

Tips:

• To make different colours in one bath bomb, separate the dry mix into different bowls then add food colouring and mix before piling into layers in the mould.
• To put something in the centre of the bath bomb make a small hole in both halves and fill with goodies then press together.
• For petals on the top add petals to mould first then press mixture in.
• If you make a batch that reacts too quickly or doesn't work it makes a great toilet cleaner!

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 :)

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:)

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.

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 :)