Four Tips to Thrive with Chronic Illness

 

Today I am welcoming guest poster Patti Kaye to the blog, to talk about living with Chronic Illness. She  has been a huge inspiration to me and is just an all-round lovely person, so I hope she can inspire you too, whether you live with a chronic illness yourself, or know someone who does and want to learn more about it. She lives in British Columbia, Canada and has lived with the effects of MS for twelve years. Whilst this caused her to have to give up her teaching job and was devasting at the time, she has resolved to approach life in as optimistic and high spirited way as she can, which I think is a brilliant outlook to have and something I really aspire to do myself. 

Creating my Small Space Home Office

I had to take a long break from 'serious' blogging, due to ill health and a certain global virus that has turned everyone's lives upside down, one way or another. In many respects, the enforced break did me good, and I've come back with a renewed determination to make the most of my little slice of the internet. So, I did something I'd been talking about for years, I set up a home office. The fun part was, I had zero available space in my little house, but I wasn't going to let that stop me. Here's how I got creative and created a quiet, comfortable working environment, without taking any space from the room layouts I already had. 

Managing Chronic Pain Week 5

After waiting an hour for a bus in pretty dreadful weather the previous week, it's probably not surprising that I came down with a really horrid cold virus the next day. I know that we shouldn't blame the weather, and viruses aren't caused by standing in the freezing cold, but I'm convinced it made it worse and have been sending psychic hate messages to the bus company ever since. Anyway, the upshot of all this is, that I couldn't attend week 5 because you are can't to go if you have something gross and contagious, on account of it being a course for people with chronic conditions who could have lowered immunity. So this is a summary of week 5, Communication, from the hand outs we received afterwards.

Managing Long Term Chronic Pain - Course Notes Week 4

Week 4 of The Pain Management course saw a few returners and a couple of absences, but I'm getting used to who everyone is, so it's much easier and more relaxed now. I was late, because the stupid bus didn't turn up, so I missed goal setting and recap from last week, which wasn't ideal, but everyone was welcoming and forgiving. I had previously warned them that the bus is hourly and not exactly reliable. Stagecoach, sort yourselves out! Anyway, this weeks theme was Sleep and, since I have a sleep disorder and already have a reputation for falling asleep in class, this should be interesting. 

Getting Help with Home Adaptions for Disability

This is a difficult subject for a lot of people, as getting any kind of help with a problem flies in the face of the British 'stiff upper lip', 'make do and mend' philosophy. This means there is often a psychological barrier to getting help, as well as a physical one, when you don't know where to start or who to approach. In this post I hope to tackle both, looking at what aids and adaptations are available and who can help you get them, as well as dealing with the emotional side of taking the step to seeking and accepting help. If you are struggling at home, but are used to soldiering on, maybe it's time to think about some simple adaptations to make life easier. 

Managing Long Term Chronic Pain - Course Notes Week 3

This was my second attendance of the Pain Management course, which was week 3 of the 8 week programme. There were a few new members who I didn't recognise, because they had attended week 1 (which I didn't go to) and skipped week 2, which I did go to, but I guess a pain management course is going to be a bit hit and miss with attendance. It is advised to try to attend all parts of the course to get the most benefit, but it is a little bit flexible as going anywhere when you suffer from pain can be a struggle, particularly when it's a set time each week. This week's theme was Problem Solving.

Managing Long Term Chronic Pain - Course Notes

I have been suffering from a chronic pain condition for over 10 years now and I continue to fight it every day. I experiment with nutrition and exercise to keep the pain under control and always live in hope that one day it will go away altogether. I am an optimist. However, since seeing a rheumatologist last year, I've been informed that, medically speaking, there is nothing more that can be done and I'm stuck with it. I've now been referred to a Pain Management course and I thought maybe it would help other pain sufferers to hear what happens, so these are my notes on part one of a group therapy course designed to help sufferers cope with long term pain. 

Sensory Issues and Fussy Eating Phases - An Update

In 2014, I wrote a post about my five year old son's struggles with food, with some ideas on how to tackle a similar situation, using everything I had learnt, along with some input from other bloggers who had faced similar situations. Last year, I edited it and reposted Top Ten Tips for Sensory Issues and Fussy Eating Phases, with a few updates based on what I had subsequently learned about sensory issues. Since then, things have continued to improve, and I thought it would be good to post an update, mainly to reassure other parents that it can get better, vegetables won't always be the food of the devil and scurvy won't take hold by the time they reach secondary school.  

Is Autism Even Real?

Anyone who knows me at all, particularly if you've read my Awesome Autism post, will realise pretty quickly that this is an ironic title, not something I personally believe, or have even considered. It is, however, something I hear a lot, so I would like to take this opportunity to explain why, in my view, the title above is a really stupid question. This will be based on observation and experience, which, in fairness, is something people really ought to rely on, before making silly statements that are likely to cause upset and distress to others, instead of just letting any old garbage fall out of their open mouths. Is Autism even real? Let the ranting begin.

What Walking Stick Users Want You to Know

When you have a hidden illness, you get used to people not realising that there's anything wrong, so when you are out and about, there can be a lot of tutting and general impatience. Recently though, I've thrown vanity to the wind and started using a stick sometimes. I found it on a camping website and it didn't look too much like a walking stick, more like a hiking aid, so I thought I would give it a try and it's bliss. It means I can walk for longer with less pain, or go out when I wouldn't normally be able to. I have been surprised by people's reactions though. Most are considerate, but some seem oblivious to the limitations of the stick user. 

Help Hannah's Head Shave!

My friend Hannah is losing her hair. Not through stress, or to relive the skinhead days of the 80's, but for a very good reason. Like me, she is a previous supporter of The Little Princess Trust, donating her hair to make wigs for children, but this time, she is going a bit further. As Hannah is one of life's lovely people, who is always the first to offer support or help to others, I thought it would be really nice to get behind her and share her story in the hope of raising more publicity, and hopefully more money, for a very worthwhile cause. I would really appreciate it if you would read on to find out all about Hannah, her mum and the fate of her lovely hair. 

Review of The Gorgeous Buddy Box from The Blurt Foundation

I have bored everyone for quite a while with the devastion caused by the death of my best friend, but, as I mentioned in my previous post, a few good things came out of it too, not least the kindness of others. Many of my friends came through with all kinds of offers of help and support and it amazed me how thoughtful and understanding everyone was when I needed them most. Although, it shouldn't have done, because friends are amazing. One particular act of kindness made me smile so much, though, I've decided to give it a post of its own. Introducing the Buddy Box, from the mental health charity The Blurt Foundation. It's a hug in a box! 

Our Weekend Wanderings, Week Eight!

Last weekend began on a Friday, because I couldn't let some awesome artwork pass by, without giving it a mention. I have to admit, it wasn't the most exciting weekend, as I somehow managed to injure my leg, doing absolutely nothing and haven't been able to walk on it since. It's really been annoying me. If I get a painful injury, I want an exciting story to go with it. At the very least, I want to have done something to earn it. No fair! We did manage a couple of trips out, though,and Jade did very well after being dispatched to Lush for emergency bath bombs! 

Living With Thoracic Outlet Syndrome. A Guest Post by Chloe

In our occasional series, Hidden Illnesses, we invite guests to talk about the illnesses that effect them, particularly those that aren't obvious on the outside. We hope to help sufferers and their families learn about the conditions and what they can do to help. Today, Chloe, from Life Unexpected, talks about the little known condition Thoracic Outlet Syndrome and how it has affected her life. Life Unexpected is a family lifestyle blog that follows a millennial mum. With posts about world travel, life with a toddler, general parenting and life as a working mum. 

Wear Yellow for Microcephaly Awareness Day on 30th September!!

Our Hidden Illness series continues, with this post from Sarah.

Tomorrow will be a very special day for me and my family. The 30th of September is Microcephaly Awareness Day. "What's Microcephaly?" I hear you say. Well Microcephaly is a neurological disorder that means the circumference of the head is smaller than it normally should be because the brain has not developed properly or has slowed or even halted growth. Micro means small and cephaly means head. Microcephaly affects 2-2.5% of the population, which actually makes it more common than Autism!

Living with ME - A Guest Post by Catherine

Today in our occasional series Hidden Illnesses, Catherine has joined us, to talk about ME which is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. ME affects an estimated 250,000 people in the UK, and around 17 million people worldwide, but many people know little about it. The message, as always is; just because you can't see it, that doesn't mean it isn't causing massive problems for the sufferer. Read on to find out more and perhaps help someone you know with this horrible condition. 

Living With a Back Condition

I'm contributing my own post to our Hidden Illness series today. Something I've been wondering about doing for a while. A lot of the subjects I blog about begin with the same thought; 'Do other people feel this way?' I started this blog because I wanted to offer support to other parents by not being perfect. Because, to be a parent, you don't have to be perfect, you just have to try. You won't always get it right, but you do your best, and your children exist safe in the knowledge that you love them enough to always give them your all, even if sometimes it's a bit wonky or soggy in the middle...

Find Me Face Down on the Floor Behind the Sofa. A Narcoleptic’s Tale.

Our 'hidden illness' series continues with an amazingly insightful and frank post from my fabulous friend Rebecca on Narcolepsy.

If you ask somebody who is ill what the worst thing is about an illness, you will find pain is probably at the top. Followed closely by lethargy or exhaustion. So we know tiredness is awful yet we fail to recognise as a disability. This blog article for The Parent Game is to help you understand the rather odd life cycle of a narcoleptic. Please try and stay awake!

Living with Asthma from a Young Age - How to Help

This guest post is written by my daughter Jade, who would like to tell you about her experiences as an Asthma sufferer. She was first diagnosed at the age of 2 and has lots of advice to help young people cope with asthma, based on her own experience. If you know a young asthma sufferer, you might find this post helpful, because no one knows this illness better than someone who has battled it for 20 years. Asthma is dangerous and prolific and it costs lives. Many people are affected by it and the charity Asthma UK is campaigning for Change to improve the lives of the millions of sufferers in this country. Please click the links to find out how you can help. Over to Jade, who I'd like to thank for writing such a lovely post!

Living with MS, Lorna's Story

I have a lovely friend called Lorna, who I have known for a number of years. I am constantly in awe of her, since she is the sort of mum other mums are jealous of. She bakes amazing cakes, she is super-organised, holds down a demanding job and even finds time to be a fantastic Beaver Scout leader! She is amazing. However, one thing you may not notice about Lorna is that she has a Multiple Sclerosis, a serious medical condition that can effect all kinds of areas of function within the body. She has kindly agreed to spend a little time telling you more about it. Her words a truly inspirational and I may just love her a little bit more after reading them!