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 ♥

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Motherhood is Exhausting - First Week of Having a Puppy

Hi everyone, well if you haven't read my last post already, we have a new 9 week old puppy and considering the fact that we have not had a puppy in my family for around 30 years (due to only having rescued Poodles), having one now has been a bit of a shock to the system!  It's only been 5 days so far and already I feel like I've been hit by a bus.  I don't have actual human children (as of yet) but I very much feel there are a lot of similarities.  For instance -

* Instead of changing nappies - I have pee pads and I'm constantly washing puddles on the floor.
* Instead of waking up to a screaming baby - I wake up to a very loud crying fur-baby!
* Most new mums seem to look a total mess and say they have no time for themselves - I can't even remember the last time I washed my hair, I get so warn out by early evening that the first time she finally takes a good nap, I have to do the same.  Eating anything has become a treat, I'm now used to drinking cold tea and getting any form of work done feels like a far distant dream!
* You long for that minute they get tired out and finally fall asleep - I literally use all my energy reserves to wear her out from playing, just so I can have 10 minutes of peace before the chaos returns!
* You start worrying about them the second you bring them home, is she breathing ok, is she eating enough, why is she scratching!!!
* Getting woken up super early with hardly any sleep - yep, my fur-baby seems to wake up every two hours, without fail.
* Therefore being so tired and exhausted you can barely function and you just want to huddle up in a corning and cry - yep constantly!
* Being covered in mushy food - how does one little dog make so much mess!!
* Constantly tripping over and having to tidying up toys that are strewn all over the floor - again yep!
* You don't want to hurt their feelings or upset them by having to discipline them but at the same time you're about ready to tear your hair out because they just won't take a single bit of notice of anything you say - what can I say, I try but looking at that adorable little face makes it very hard to tell her off.
* You begin to doubt yourself in every way and feel you're the worst parent ever and you wonder how you're ever going to cope - trust me, this feels just the same, I feel like this all the time.
* You wonder if you will ever see the outside world again or you'll be covered in wee, pooh and mashed up food forever more!!
* Having the patience of a saint - have any of you actually ever had to potty train a puppy?  Oh dear god!!
* Do they even make scratch mitts for puppies, because someone needs to!
* And as for those baby teeth, they're like built in needles, I have so many cuts on my fingers, my thumbs, my ankles, I'm like a walking sieve!

They say the 'puppy stage' last for up to 4-6 months, so this may be the last blog post from me . . . I may be dead by then, bid me a fond farewell :-(

Seriously, I am shattered, I knew it was going to be hard work but Oh boy!  Challenging, exhausting, knackering, emotional doesn't even cover it.  But even then, when I look down at her when she's fast asleep looking so innocent butter wouldn't melt, she melts my heart!  I cuddle her in my arms and I just feel overwhelmed with love, just like any other new mum because despite the chaos, she's my little baby.

For daily updates, photos and videos of little miss Heidi-Kate, please go follow her Instagram account.  And until next time, (if I manage to survive this puppy phase), Stay Happy ♥

*(P.S. Some of you may laugh or think it's stupid, comparing having a dog to a baby but I honestly feel just because I didn't give birth to her, she is still a new tiny 9 week old living being I need to look after and love, and with that has come a lot of tiredness, emotion and stress, especially with me having bad health, so I feel there is a strong resemblance.  So please keep that in mind, thank you.)

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5 Things To Do On A Down Day

Hi everyone, part of having my Fibromyalgia condition means that I suffer a lot with anxiety, depression, stress, generally feeling down and days when I feel like I'm going crazy, it's not fun and it's hard to deal with and some days even though I can get up feeling ok and quite ready for the day, it'll suddenly hit me for no real reason and I can feel miserable for the rest of the day!  Plus I'm in pain and discomfort most days and have my ibs condition too (you can read about that here) which often helps make me feel down and pretty crappy.

I'm not someone who likes taking more tablets and meds than I have to and I really feel pumping myself full of chemicals is only going to cover up how I feel emotionally rather than trying to deal with it and I much prefer trying to make myself feel better, so I've had to find ways to cheer myself up and make myself feel more positive, it's not easy but it does help and I thought I would share a few of them with you in the hope that it might help some of you too.

My number one go-to thing has to be sleep!  It's really not the best use of my time, but it's the one thing that gets me away from feeling down and feeling ill too.  I've been using a lovely app on my phone lately called Calm, I set it to the 'mountain lake' scene and put the volume up, then lay on my bed with my eyes closed and just try and imaging I'm led on a soft blanket in a secluded clearing in the woods, next to a lovely stream.  With the birds singing and the warm sun beaming down (and usually with my celeb crush led next to me), well whatever works right! ;-)  But lately that's been really helping, even if it's only for 10-15 minutes, I still feel more refreshed and a bit calmer afterwards.  I always set my alarm before I closed my eyes or I know I will doze for too long and I really have to try and clear my mind or I will just lay there thinking of everything I don't want to be thinking about!

The second thing is YouTube, there's definitely a few people on there that always cheer me up.  It's a good 'quick fix' to watch a 5 or 10 minute video, just to get your mind to stop thinking unwanted thoughts and think about something else.  I like chatty ones, vlogs, funny collabs (especially Zoe and Mark ones, they're hilarious) and I've also been watching Sawyer Hartman's videos every day for the last couple of months.  I've watched him for years but he's been vlogging everyday lately, he has a drone which he flies pretty much everywhere and the views are incredibly beautiful.  Just click on his name for a link, that video is probably my favourite one so far, just watching these makes me feel calmer (and slightly jealous and desperately wanting my own drone!!)

Obviously music is a major one, but definitely avoid anything with sad memories attached or generally sad tones, I find any piano music quite depressing.  I usually go one of two ways when listening to music to make me feel better – either full on hard shouty rock music, like Linkin Park, POD or Razor Red Noise to help get my anger out or I listen to really upbeat dance music or old 90's music which I love, it always makes me feel more positive and a gives me a real energy-boost kind of feeling.

Definitely try and find time to watch a good movie or your favourite show.  Pick a film that you know always cheers you up and makes you feel good, even if you're not in the general mood to watch it.  Of course my favourite show to watch is The Walking Dead, anytime day or night :-)  And since I love so many films (you can check out my 50 favourite movies here, for some ideas), I know I can usually find one that will cheer me up.  I've been loving Boondock Saints so much lately, it's my go-to film that always makes me laugh plus of course it has my fav man in it :-)  If you get anxiety over things like being single, obviously avoid anything about love stories or breakups!

I know this sounds obvious and but trying to avoid stress as much as possible is a must.  If there's confrontation with anyone, just keep your cool and back off, don't aggravate the situation, if you're feeling depressed anyhow you're far more likely to say something you'll later regret!  Apart from that I mostly just try to avoid thinking, about anything particular.  Avoid all negative thoughts as much as I possibly can and I don't let myself think about past upsets, bad memories or anything that I know will generally upset me whether I'm depressed or not, because lets face it, that's only going to make things worse!  Having a 'power' word has always been quite helpful for me.  As soon as I start to get a negative thought or a bad memory pop in my mind, I literally stop myself from continuing that thought and say my 'power' word to myself, sometimes out loud or just in my mind.  It can be a funny word that triggers a good memory or that makes you think about something nice straight away as soon as you hear it, or a short positive quote - anything that quickly changes your thoughts for the better and stops you thinking negatively.

Once you get into that rut of feeling down, it's like a dark cloud comes over you and you can't see the light through it, so you have to try anything you can to keep yourself calm, stay away from any triggers and try and get your thoughts out of your current head-space.  I find distracting my mind and thinking about something else, anything else even for a short time, can really break the cycle and help lift the cloud!

Having little things to look forward to whether it's planning to watch a good film, saving up to buy something nice, or something a bit bigger like planning a day out with friends or a weekend away can really help too.

***********

Of course friends and family can be a major help, but these are just a few things that I try and do when I'm on my own and there are times when I have to just rely on myself to make me feel better!

I hope you like this post and found it helpful.  Are they any other ways that you use to help make yourself feel better?  If so please share them with us all in the comments :-)
Until Next Time Stay Happy ♥

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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

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