Learning to Manage Chronic Pain

Hi everyone, over the past 5 weeks I have been attending a Pain Management course, and since I promised a few people, I have written a post all about it to report how it went, what type of things I learnt and if in general I found it helpful.  So here it is -

I have struggled for so many years, feeling very cut off and left alone to cope and manage because all the doctors told me is that I have this condition for life, there is no cure so you're stuck with it.  Learn to manage it, look up tips online, off you go, bye-bye!  And that was it.

I've felt like I'm floundering, just left to pick up the pieces of what's left of my life, just trying to push on through and all the while being in constant pain, exhausted and depressed. I didn't know where to turn, the internet wasn't the best of help because there's just so much online, where do you even start, what is actually the right advice to follow!

In general I am proud of myself, because I struggle every single day trying to get things done and get through the day, sometimes even when I'm in so much pain I'm in tears. But most days I do it, I still push through and I get what I can done!  At least now, after completing this course I have that little bit of extra knowledge and positive thinking behind me, to be able to help me get through life in a little bit of an easier way!
Being able to go on this course has given me that support and understanding I've desperately needed!  It's given me all the answers I've been searching for and more.  If it wasn't for my councillor (that I see for my depression issues), telling me about the course, I would never have known about it.  As soon as she told me, I said I was definitely interested so she referred me.

I've now learnt how important it is to have people in your life to talk to (friends, family, a nurse or good gp etc) about your health, your emotions and fears, your medications, problems and ways to help solve them and for general support!  Because you should never have to manage alone!

I've learnt how important it is to exercise and stretch!  Even if you're in too much pain to move, which sounds crazy right!  But it's so true. The more you get your body moving, even a little bit each day, the more it will get used to it, strengthen the muscles and help you feel you can move with less pain.  It REALLY does work!

I've started doing my short stretching routine just for 10 minutes every day and it's already made a difference in the last few weeks.  I've learnt that it's ok to just do a little here and there and that things you already do, like housework, walking or playing with the dog etc any movements are classed as part of your 30 - 60 minutes of daily exercise!  It made me feel like I was already achieving something and I hadn't even realised!

I've learnt ways to help plan ahead, not forget important things despite my foggy fibro brain.

I've learnt that it's ok to take pain relief when I start to feel ill rather than waiting until I feel even worse and I'm trying to manage, because I feel guilty about giving in and taking them beforehand.  Because if you wait to take them when you feel even worse they're less likely to work!  So I don't need to feel guilty anymore, plus not only does it seem to help ease my pain better, I find I'm now taking less pain killers than before!

I've learnt that it's ok to feel down and sad but there are so many ways to help deal with it that you can do for yourself, keeping an emotion diary and writing down your feelings, healthy distraction techniques and other ways to turn it around and have a more positive attitude to help feel better!

Breathing and relaxation techniques, mini exercises and even the best ways to help others understand our needs better!

The tutors were completely lovely and so understanding, mainly I think because they had chronic illnesses too. They had all been through it the same as the rest of us attending the class, and they had also taken the course themselves.  It had worked so well for them they had been able to go from bed-bound, severely ill people hardly able to walk to people with lives!!  I think that helped give us all more hope. There were 7 others on the course with me, each of them with very different and difficult conditions but we all agreed how much we had learnt and how much we were all so grateful to be able to do this course.

One of the best things I found for me, was being able to put all their various techniques and ideas into practice in small ways in my daily life, just little changes or added things that have made a huge difference.  Because they taught us in such a way that we could all make the ideas work for our individual needs.  That was definitely a game changer for me and means that I will always be able to keep up with these changes and progress with them to really help me manage my condition in the long term.  Of course I'm not saying it was a cure-all, I will still always have my health issues and will always suffer with being in pain most of the time, but I will ALWAYS be so incredibly grateful for all the help I was given and the information I can now use to help me manage and get through the bad days.

If you suffer from any type of health condition or chronic pain, I cannot urge you enough to go and talk to your gp or health practitioner and ask them about a pain management course. Not all areas have them, but they are becoming increasingly popular and the more people that ask for them, the more chance they will create groups in all areas.

I also highly recommend this book "Self Management for Long-term Health Conditions". This is basically what the course is based around and the tutors constantly referred to it throughout the course. So if you aren't able to get in to a course or you want a head start, go get this book.  It's available to borrow from most libraries and you can purchase them online for as little as £5 from both Amazon and ebay.

I hope this post helped some of you who are in the same position I was and are currently struggling with your health condition.  If you would like any more details about the course or would just like to talk to me, please feel free to contact me via email (crystalsparklydreams@hotmail.co.uk), IG chat (@CrystalSparklyDreams) or DM me on Twitter (DaniJ72), and I will try and help in any way I can.

So until next time, Stay Positive ♥

Follow my blog with Bloglovin

Living with an Invisible Illness

Hi everyone, after my last post I received very mixed reactions and comments.  Some people thought I was being quite over the top and dramatic saying how hard I was finding having a new puppy (who is currently driving me mad and still wearing me out, bless her little fluffy paws)!

I feel a new puppy for anyone can be super tiring as a few people have told me, but for someone with my type of health condition it can be a even harder.  So for those who don't know, I thought I would take this opportunity to tell you a bit more about my heath conditions and the type of symptoms I have to deal with on a daily basis.  To start off with I have several conditions; Fibromyalgia, Ehlers Danlos Syndrome (EDS) and chronic IBS, these all come with their own symptoms but as they often go hand-in-hand with each other, the symptoms get very intermingled.

Have you ever run a marathon and the next day feel like you've been hit by a truck, or had the worst flu ever?  That's how bad I feel 90% of the time, that level of feeling like I have no energy left, feeling weak, achy and in pain.

Doing even the most simple mundane tasks like vacuuming, washing up, having a shower or changing the bedding, tasks that most people barely think about, exhaust me to the point where sometimes I almost pass out.  And as for going out, even just for a few hours makes me so tired and worn out I have to sleep and try to recuperated for at least the following couple of days.

Here's a brief list of symptoms that I live with all day, every day -
Tiredness
Achy and very painful joints, muscles and limbs
Headaches
Bones dislocating easily
Stiffness
Muscle spasms
Brain fog
Depression
Random weird feelings anywhere on my body that can feel like hot patches, itchy for no reason, pain like I've just bashed myself, bruised feeling or extremely sore patches that feel like cuts and grazes.
Just bending down gives me stomach pains and makes me dizzy.
As well as all that, I have very over sensitive skin, I can even feel a hair on me and clothes labels feel like razor blades, and if I get knocked or poked, it pains and bruises as much as if I had been hit.

That's just stage one, then when I've been doing tasks, add in to that list even more exhaustion, less energy, feeling extremely dizzy and sick, sometimes palpitations too, that's stage two.  And if I try to push on through it and carry on with daily tasks or extra jobs that I need to do, I go on to stage three where all my symptoms get worse and I end up feeling so exhausted and ill, I can barely move.

Finally, the more I do, the worse I get and if I over-do things too much too often, and/or I get too over stress, I get flare ups.  These are like being in stage two/three constantly for up to a week.  Trying to 'live life' and function feeling this  bad, is incredibly hard I can tell you, but life doesn't stop, the tasks still need to be done, and of course our puppy still has needs too.  Which as you may understand a little more now, is why I was finding it so hard.  In fact I was finding it so hard and getting so stressed with the whole situation (i.e feeling ill and still needing to manage), that I even had a break out of bad eczema which I haven't suffered with for about 9 years!  After eliminating different foods and other possible causes, my doctor told me was all due to the stress, I didn't even know stress could cause eczema but apparently yes it can!

So there you go, just a brief insight into what I deal with each day and how I feel.  It's not easy, it's not fun but sadly I'm used to it so I make the best of it and push through because that's just what you have to do.  Just maybe next time you throw the duster around or take out the trash, spare a thought for those of us with an 'Invisible illnesses' that can't do all these simple things quite so easily!

If you would like to know more details about how I came to have these health issues, when I was diagnosed etc, you can click here to see my post all about it, or click on the 'health' tab at the top of the page.

Going back to basics in my next post, with a little life update and some favourites.  So until next time, Stay Happy ♥

Follow my blog with Bloglovin

Fibromyalgia; My Story

I've been promising you all for a while now that I would talk about my health issue, but it's such a giant task I've never really known where to start but since it has been the main cause of me not posting the last two weeks, I thought this would be the ideal time for me to talk about it.

Have you ever had a really bad cold or flu?  Of course you have, everyone gets those right!  Do you remember how exhausted you felt, the lack of energy, feeling so tired and lifeless you can barely move? Well imagine feeling like that nearly all the time!  That's a very small insight into how someone with Fibromyalgia feels on a daily basis. . .

My Story:

I first started feeling unwell back in my final years of school, I got headaches all the time, I would start to feel tired and worn out long before my friends when doing any physical activities and my muscles would ache.  I lost count of the amount of times I had to go and see the school doctor, only to be constantly told the same things; we can't find anything wrong with you apart from being a little anemic!
It wasn't until my last year of college that I really started to realise something wasn't right, I was doing Performing Arts back then and loved it but every evening I would fall asleep on the bus on the way home, several times I'd wake up and to realise I'd missed my stop!  I thought it was just the over-exertion, that maybe all the running around and physical activity was just too much for me or maybe I was just unfit but that didn't explain the headaches or other niggly pains I had.  The following year I signed up to do another bunch of classes, this time in English Lit, Media Studies and Drama, but after only 2 months I was struggling.  I was due to take exams in the November and I knew there was no way I'd pass them because I'd been out of class so much feeling ill, so after discussing it with the tutors, we all thought it would be best if I left.

Over the following year, I struggled even more, I couldn't keep down a job and even weekend jobs I found difficult.  Getting up early was a nightmare and for several days after work I'd be completely shattered.  I saw the doctor all the time but all I managed to find out was that I had Anemia again, but I knew that wasn't the answer, the symptoms I was experiencing were worse than before.

I started seeing a specialist at my local hospital who ran many different tests but still couldn't help and it wasn't until I saw a locum doctor by chance one time, that I was finally told "Oh you have ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) it's here in your notes, didn't you know!" And of course I didn't, apparently it had been in my notes for some time but I'd never been told by my own doctor!

Another couple of years later, after trying to carry on living a 'normal' life, my symptoms just kept getting worse and so I was referred to see yet another specialist, this time at an ME clinic half an hour from me.  After a tone of questions about every aspect of my life, how I coped physically with my daily chores and an overall examination, I was then finally diagnosed with Fibromyalgia.  I was told that at one point I did have ME but as it was never dealt with in the correct way, it had progressed in to this.  I was told that the main difference between the two conditions was that (if dealt with and treated early), ME was a short-term condition, some people have it for only a few months, others for a few years but with Fibromyalgia (also known as Fibro or FMS), it is long-term only, possibly for life.

It was very hard to hear this and even now, nearly 8 years later I still struggle with that knowledge but somehow I've plodded on and I'm still here, I'm still standing (sometimes lol) and somehow I plod on and I manage.

I've never had much help from my doctors or specialist other than more useless tests and being 'kept an eye on'!  I've even asked them if they can tell me about help groups or people I could talk to about it but just got told, "Oh you'll just have to look online, we don't know of anywhere"!!
So it's generally been down to me to find my own ways of coping and managing my 'condition' and even though I do still struggle at times, at least I now have some of the answers I was looking for.

The array of symptoms I get is as long as my arm; ranging from aching and paining muscles and joints, headaches, nausea, digestive problems, tiredness, fatigue, weight loss, dizziness, confusion, frustration and brain fog, numbness, an extreme lack of energy, sudden random pains, Costochondritis, restless legs, food allergies or sensitivities, immediate forgetfulness, sensitivity to changes in weather, seasons and even slight changes in temperature, anxiety and depression, skin so sensitive I can feel a loose hair on me, stress also plays a big factor and any over exertion of physical or mental activity. . . .

They're pretty much the main ones for me but of course every Fibro sufferer is different, we don't all get the same symptoms and effects.  And honestly, no I don't get all of these symptoms all of the time but, I do get a good few of them quite a bit of the time and I never know which ones I'm going to get or when, so that certainly keeps you on your toes!

Every-so-often, especially if I've been going through a very stressful time or have been really over doing things (which I have with both lately), I then get 'flare ups', that's basically when you get all your worst symptoms, in the most full on way and all at once and it pretty much leaves you feeling like you've been run over. . . several times. . . by something big!!

I knew several years ago that I was never going to manage to do a full time 9-5 job and so I try to do a little work from home, that way I get to choose my own hours and rest when I need to, and of course no early mornings :-)

I always try to plan my activities, like household chores for instants, but of course there are still times when unplanned jobs happens and all at once, just to taunt me!

Getting up out of bed is one of the worst things for me, I sleep heavily and it takes me quite a good while to 'pull round' and feel properly awake.

Other examples would be things like washing my hair, vacuuming or walking which can all add to warring me out and cause pain and discomfort, especially at my worst times.  Thankfully though, the majority of the time, even though I get these various symptoms, they don't cause me too much of a problem as I'm so used to having them, especially on my good days.

Of course I get my 'good days' too which are great and as long as I take things easy, no my limits and try to stick to them and take regular breaks, I pretty much manage to get through!  It also helps a great deal doing things that calm me, like listening to music or watching a movie/YouTube and having people in my life that understand and don't expect too much of me is one of the biggest and best things of all and I'm so grateful to have several of those people around me (I hope you know who you are)!
Meeting anyone new though can be very difficult and worrying, trying to explain the condition to them and make them understand.  Especially as I don't 'look' ill, people often end up thinking I'm putting it on or I'm just lazy which sadly is a common misconception with a condition like this, hence the nickname 'the invisible illness'!

I've also met lots of different people with this condition and we've all agreed how nice it is to be able to talk to someone who really truly knows what it's like and it's such a comfort knowing you're not suffering with all these strange symptoms on your own, other people get them too!

So basically, Fibromyalgia for me means that; I can do anything you can do, but it'll take me twice as long and I'll get twice as worn out doing it!

I hope this post gives you a small incite in to my condition and helps you to understand it.  There's a tone of information online about this condition and even though I've put a few links at the bottom, please feel free to look at any other sites you wish.  Also please feel free to leave me any comments, do you have this condition or know someone else that does?  Or you can leave me any questions, I'm happy to try and answer any you may have.

Fibromyalgia UK

Fibromyalgia Support
Voices of Fibromyalgia on Facebook
Fibromyalgia Support Group on Facebook

M.E. Association
Iron Deficiency Anemia NHS Choices

Follow my blog with Bloglovin
All pictures used were taken from Google, Pinterest and Facebook