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 :)

 

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 :)

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:)

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.