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 :)

 

Chronic Comforts & The Prince's Trust Enterprise course.

Todays post is to raise awareness and share my experiences of the princes trust. The Princes trust is an amazing organisation which helps 13-30 year olds who are unemployed or struggling in school. They were founded by HRH The Prince of Wales and have been running since 1976.

This week I was lucky enough to have a place on their Enterprise program. The Enterprise program helps young people (age 18-30) who have a business idea, learn about business, create a business plan and apply for funding. They run a 4 day training course that teaches:

• Skills to run a business
• Marketing and selling
• Pricing, book-keeping and cash flow forecasting
• Business plan topics and structure
• Mentoring.

There is then a 1:1 meeting with the training facilitator to go over anything, and discuss the next steps. You're provided with a business mentor who then helps you develop your business plan and ideas, they're available through email and face to face meetings. Finally you attend a business launch group where you pitch your business to two Prince's trust volunteers and they decide if your business is viable, they then decide whether to loan you funds to start your business. Once you have done all this you become a Princes Trust supported business.

Did I happen to mention that all this training and support is FREE!! Obviously the loan is repayable (6% APR after the first 6 months, £20 a month until then), but everything else is free.

This course was amazing. The trainers for each topics were all volunteers and included those that had set up their own business' those that sold services for very influential business', accountants and venture capitalists.

There is a workbook you work on throughout the course, completing this can give you a level 1 and 2 qualification in Exploring Enterprise.

Now I'm working on the business plan with a view to re-launching the Sending Spoons shop with a new name of Chronic Comforts and some exciting new products in the pipeline!

The Princes trust runs in several cities and towns across the UK, for more info contact 0800 842 842
or visit: princes-trust.org.uk,

If you want any more information, or have any questions feel free to leave a comment.

As always thanks for reading,

Laura :)

Clubbing in a wheelchair

So on Saturday I attended a friends hen party. This was something I thought I would never be able to do. I decided I would try in some way to attend. After a month of planning, my husband and I had sat down and thought of a plan of how I was going to get to her house, then to town, into clubs and then home again, safely, cheaply and without compromising my health or wellbeing. We decided I would go out in my power chair as this would give me the most mobility and independence whilst out and that i would need a wheelchair taxi.

Next came finding a comfortable and wheelchair friendly outfit, so I had mid waisted trousers on as a skirt or a dress in a wheelchair just doesn't work for me, I had a top that consisted of several layers so I could remove layers as needed to control my temperature, it's cold outside in the UK at the minute and I overheat inside. we decided on a cross over jacket type thing as it crossed over at the waist hiding my stomach and was mildly elasticated at the bottom meaning it stayed in place around my waist instead of riding up my back. I struggle with Raynauds in my hands and feet so keeping my feet warm but stylish was a priority. I settled on my glittery black diamante high tops and thick socks. Basically the outfit below (obviously this is not me) Tops from next and jeans were mid waisted supersoft jeans by F&F at Tescos. They were so comfy even after 7 hours in my chair. My hightops (below) were from matalan.

  

I struggle with keeping my hands above my head or up for any length of time and with manual dexterity in my hands so i used clip in hair extensions and styled them in my lap to make it easier, then all i had to do was clip them in with a bit of help

The end result before i changed into my outfit.

Once i knew i was going out in my chair and what i was wearing it was settling on a plan and a back up plan to get there and to get into various bars and clubs. I did some research, every time I had to go into town i made a note to look at the entrances of bars and clubs to see if i was able to get in. I pre booked a wheelchair taxi to get from my friends house to town and back again. This was handy as the one that arrived fitted the rest of the girls in so I felt included. Once in town I hit a snag straight away, I was so sure one of the bars didn't have a step I didn't bother to look, turns out it had a step just a bit too high for my chair to climb so that one was out of the question. we went onto a pub and the main entrance wasn't accessible, my friend went in to ask if they had a ramp and it turns out they had an accessible side entrance that wasn't signposted.

After this we found a small bar with cheap drinks, good music and level access through the front, the only snag was that the women's toilets were upstairs. The staff at this tiny club were so accommodating they cleared out the men's, cleaned it and stood obstructing the door so I could use the stall. It wasn't ideal but it worked. After this we went to a larger club. This was a chain of restaurant/bars called revolution, they had level access, disabled toilets and a lift up to the disco hall.

All in all I had a great night and found the bar staff and door staff to be really helpful and accommodating. Ill be honest Ipswich is a medium sized town but I don't think they had seen many disabled women wheelchair dancing so that's a first. The point of all this is if there is something you want to do there may be a way of doing it, it might not be straightforward or easy but it may be possible.

The aftermath

So if any other spoonies are reading this you may have noticed i said 7 hours, yes i was out in my chair for 7 hours! The following day i couldn't sit up without everything spinning, low blood pressure, tachycardia and nausea. I tried to move and quickly realised my whole right side from my waist downwards had seized up, i couldn't bend my leg or move it. Sooooo i spent the whole day lying down with a heated blanket over my right side and salty snacks and fluids to calm the POTS down. I'm expecting the fatigue and right sided stiffness to continue all week but it was worth it.

As always thanks for reading, feel free to leave any questions or comments below.

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 :)