Oh, the Grief of it All….
I know that many of us (all?) go through the stages of grief when diagnosed with these conditions/diseases/illnesses (whatever you want to call them – the jury is still out!) and when things start taking a nose-dive in regards to work finances, family, friends…well…let’s face it, your life has changed, no doubt about it!
But guess what? It can get better. Your mental health and attitude in how you choose to cope can – and indeed will, make a huge difference in your life. Once you realise that your life is like a book, that part of your life was the chapter you just finished…now it is time to start a new chapter in your book of life…So it is time to live it! (I tried to find an image for ‘Book of Life’ and all I came up with were a huge bunch of animated characters for a movie (that was apparently released last year). Huh. Anyhoo…
The Moment When Things Started to Shift …
A couple of years ago at a fibromyalgia, CFS/ME support group I helped set up locally, we brought in a speaker who took us through an activity of thinking about what emotions are coming up – and throwing them away. Well! There I was, even though in pain (always), I was shocked at the emotion that came up. Anger. Severe. Gut wrenching anger. And negativity. And frustration. I *thought* I was actually a happy go lucky kinda girl. Obviously not!
I realised how much of the little energy I had was going into all of these emotions – that were doing me more harm than good! Being in a constant state of negative energy is draining. I also realised that many of the people who had come into my life through these conditions were equally negative – if not more. And that I was allowing these people to get into my head and ultimately, get pulled down to their hardships, stresses, upsets…all of which NEVER ENDED. I can see clearly now that they never WILL end, until they stop the negativity cycle and start focusing on the positives.
SOMETHING HAD TO CHANGE. And it was ME.
I realised that if I didn’t start making some changes in how I coped with things, people and my illnesses, then things were only going to get worse. Most of all, I didn’t want to lose my amazing husband…who I knew I was dragging down with me – how could it not? All I did was complain about how I was feeling, what my ‘friends’ were going through. (I put ‘friends’ in quotations, simply because I have also learned a lot about what good friends are like…and who really isn’t a friend at all.) I was paranoid about being seen, I cancelled pretty much everything (dinners out, movies, etc) and pretty much lived in the pity pit.
In the midst of feeling sorry for myself – and the hell I felt I had created for our little family, I eventually (after reading and watching many inspirational videos (which I will share with you more about in another blog), I realised that there were many, many things that I/we needed to be grateful for – each and every day. Even if it just meant that I woke up in the morning and still had my brain intact to be able to think. (Not always clearly, admittedly!). I started to be grateful for things like my comfortable bed, that we had heat, clean water and hot water that runs freely whenever we need it. That there may not be a lot of food in the house, but at the end of the day, one way or another, we have never gone without.
Basically, in short, I am focusing on my ‘inner Pollyanna’ – remember the movie where she always played the ‘Glad Game’? And in the end, turned bitter, angry, upset, miserable people into loving, kind, generous people. I think this world needs a lot more Pollyannas!
What Really Drove Things Home…
Ten years ago, my father was diagnosed with Alzheimer’s. He is now in the final stages of it, in Canada, with no care home facilities available (where my parents live, they are 15,000 beds short). Although they live on another continent and the last time I saw my father was 2 years ago, I am aware of SOME of the many things that my mother has to cope with every single waking moment. All I can say is that until you have a close relative or friend with this disease or work with people who have it, you will know the hell that their carers have to go through. As a carer/spouse the ongoing frustration, upset, anger and every other emotion that bubbles up (on a constant basis – because it just NEVER STOPS) I can’t even imagine. But what I DO know, is that in comparison a lot of the little niggles that are in my life that I put any negative energy into, is wasting what little energy I do have.
And because of hearing all of what my mother is having to deal with (on top of just the sheer exhaustion of it all). I started to make a lot better decisions in regards to dealing with my inner anger. Now, when an issue comes up, I think about it, I ask myself, ‘In the grand scheme of things, how important is this ‘issue’ (which in many cases wasn’t an issue at all), going to affect me/us? And let me tell you – the number of things that used to get me upset, became irrelevant. I also reduced my flare ups by not getting so stressed out!
I also came to realise that, like many of you, I am not only a high achiever – but that also means that I am a) a control freak and b) have some OCD issues that needed to be reviewed for my own well-being. (And admittedly, I am still working on these things – and probably will be for the rest of my life) – but at least I know what my triggers are…which were also triggers for flare-ups. Why?
BECAUSE THE MORE STRESSED YOU GET – THE TIGHTER YOUR MUSCLES GET = FLARE UPS!
I Get IT!
Actually, we all get it at Bodymap Apps
As my very dear, wise Uncle Zino used to say, ‘ You will never, ever understand what another person is going through – simply because you are not them. You may have knowledge – but never understanding.’ Another wise thing he said (of many things) – ‘You will never appreciate the good in your life until you have experienced the bad’.
One of the first lessons I learned with this illness was that NOBODY was ever going to understand what I was going through. Ever. So to stop expecting that one day they would.
I can assure you that I/we have been through a lot because of these conditions. We’ve gone through the financial hardship of going from a fairly healthy financial position, to being a one income family. In the throes of it all, we said goodbye to our pension (properties), our retirement home/winter getaway, vehicles – to me asking my husband if we have enough money for an onion.
Through it all we have learned A LOT. I spent several years not leaving the house, due to depression, anxiety and a good dose of agoraphobia (a lot to do with fear of falling). I personally went from a high achieving professional, who had no issues travelling on my own all over the place, to needing to be with someone when going to get the groceries (the rare time I did go out).
What Helped My Family and GP to ‘Get It?’
One of the biggest thing that has made a difference for me (and thousands of others) is the FibroMapp App By being able to track my experiences from sleep deprivation to pain levels; other symptoms to tracking my medications, this app has helped hugely. In fact, my husband is now in the habit of checking my current entries and journal, to get a better idea of where I am at each day. (And he was the one to notice that a few weeks ago, during the time I was coming off an anti-depressant he recognised that things with me were not good…to the point of getting me into the GP – STAT!). This way, on days where I am in a flare up or high pain or other more severe symptoms, means that he knows that it’s time for him to step up to the plate…help with laundry, dinner, let me sleep…give me massages etc. Without a grumble. (And yes, I know, I am a very lucky girl and believe me I am thankful and grateful…and try my very best to make sure he knows this). Most importantly, the two words that go together the most with these illnesses…as I am sure you know all about…
The FibroMapp App is helping thousands of people in a variety of ways – one of the most important ways I believe this app helps is simply because I am able to ‘tell something’ this is exactly how I am feeling. And get it out of my system!
I Don’t Have to Say I’M In AGONY Any More…
My hubby simply knows where I am at every day. And my doctor has a much better grasp of what my daily quality of life is like through the reports the FibroMapp App generates.
In fact, the few times where some concerning issues cropped up, not only did I not have to go in to see my GP, she has actually come to the house (and sent me to the hospital).
The reports have helped me hugely in understanding my patterns – something we all have – patterns.
Understanding yourself, your medications, what is putting you into a flare-up, the sleep, higher levels of pain and brain fog all help you to get a grasp on what is going on – why, and finding the answers as to making changes in your life that will make a difference.
I can assure you that the thousands of people who use FibroMapp App are finding a lot out about themselves, as it their medical professionals and ultimately. This means, we are able to get the help we need – including from within ourselves.
Yep. You read that right! Even with everything we have gone through as a family as a result of these illnesses on top of my own personal health (both physical and mental), I realised that actually, I am pretty lucky! (I am waiting for the comments saying how these conditions have ruined people’s lives…And all I can say is, ‘It will continue to wreck your life in pretty much every aspect, until you choose to change your behavioural patterns, including changing things be more positive and know that you can do it!’.)
I started to look at others who were in a heck of a lot more serious situations physically than myself – and their attitude. One of my favourite inspirational people has to be Morris Goodman – The Miracle Man. His philosophy is basically ‘Once you have your mind, then you can start putting things back together’. (This was a man who was in a severe plane crash, burned severely, couldn’t breathe on his own, was in a coma, paralysed, couldn’t speak…you get the picture). What the mind conceives the body will believe. I fully believe that. Morris, trained himself, through his mind, to not only breathe again (which the doctors couldn’t figure out how), to talking…with his goal being to walk out of the hospital – unaided – for Christmas.
During this same time of me starting to understand that the way I dealt with my illness was ultimately dependent on what I believed – in regards to what I could accomplish (even from bed), to seeing one of my dear friends almost die from a rare disease called NMO This rare and nasty disease which is kind of like MS but isn’t, is what my lovely and dear friend Helen wound up in the hospital for several months with. At the beginning, undiagnosed, she was paralysed up to her chest (including it affecting her lungs), incontinent, major loss of vision and many other completely and utterly horrible things.
Have a look at this picture of Helen after they started treatments. What a smile!
On the few occasions I was able to visit with Helen in the hospital (which is in the middle of nowhere, so I was reliant on hubby/weekends to go and visit…but every single time, all we did was…laugh! And talk about things like catheters etc…once you have FM/CFS/ME we don’t bat an eye to such chat, do we?!).
This lovely young woman, who wasn’t even 30 said goodbye to not only the use of her legs, her vision, but also her job, her car – and as she had travelled outside of the UK and lived and worked abroad within a 2 year time span of her becoming ill, she was unable to get any benefits either. But she kept smiling…And guess what?
She started to get better. She learned how to walk again. And she certainly continued smiling and laughing and enjoying her life to the fullest!
The other day, Helen came over to visit me (we had a lovely pyjama day together in bed (of which my husband doesn’t even bat an eye when he has come home from work to find me and another woman in bed, either sleeping, watching a movie or chatting…on his side, too!).
Anyways…I was in tears as she walked up the driveway – without even a walking stick…and, as usual, with a smile. Yes, Helen is in remission – and hopefully will stay there (forever!). But in the meantime, she is enjoying life to the fullest. Not only did Helen propose to her partner Kirsty. (And sadly, I cannot seem to add the photos of Helen swinging around on a swing having fun…or the proposal to Kirsty – done on toast, with the ring in the middle of the plate.. 🙁 )
In fact, Helen has started a wee business, sewing adorable ‘vintage’ aprons, ‘bag in a bag’, headbands – and what I think is most interesting – sensory jackets for people with dementia, autism, visual impairment etc This is her Facebook page! (I am SO proud of her!!!!) www.facebook.com/brawhem In fact, if it wasn’t for fibromyalgia, these amazing women would never have come into my life – as Helen was initially diagnosed with fibro (and wasn’t investigated any further, because she, too, was ‘tarred with the fibro brush’ – you know what I am talking about…..’it’s only your fibro’ causing xyz… Another very good reason as to why the FibroMapp app is helping people get diagnosed with OTHER conditions – and getting the CORRECT treatment.
And…You CAN Do IT TOO! We ALL Can!
What you THINK about, you BRING about.
Be happy. Be grateful. Be thankful. And just BELIEVE in yourself. If you are reading this right now – then you have the ability to change how you live your life. Here are just a few things that have helped me hugely:
- Turn on some fun and happy music – sing, dance (even in bed), feel the joy and happiness it brings to you – immediately
- Have an Attitude of Gratitude (even for the littlest things…ie – I just went to the loo and was grateful that I still have some bladder control!)
- Cut out negativity – is your Facebook feed full of negative dooms day stuff? Are you on support groups where nobody shares their good times, just the bad? Watch the news and read the papers and feel even WORSE? Have friends and family that do nothing but bring you down? CUT IT ALL OUT. YOU HAVE CHOICE.
- Help others! If you are able to see this blog, then you are able to do many things…! Why not offer to help your chosen fibromyalgia or CFS/ME charity?
- Find a craft/hobby that you can do and enjoy doing – not only is it therapeutic, but it can be an excellent distraction for pain etc.
- Have FUN!!!! Understand that there will almost always be ‘payback’, but plan accordingly (This is where the FibroMapp app has helped me as well. With the app we understand what causes pain, flare-ups and other symptoms – and we also are able to figure out our average recovery time. So – pace yourselves! But enjoy life! Heck, I go to the cinema now with a bag filled with things like cushions, ice packs for my neck, neck bracem sunglasses…thing is…I go. (And the bag filled with my accoutrement on the top, is an excellent guise for the nibbles packed underneath (I REFUSE to pay £7 for some popcorn!). I used to cancel everything. Then I stopped making plans altogether. And basically, once again, the four walls of our home became my prison. Get out! Enjoy yourself!
- LIVE LIFE. LOVE LIFE. LOVE YOURSELF.
Lastly, I cannot express enough how AMAZING this is…it is called The Meaning of Life Experiment. It is free. Amazing videos, meditations and more. The videos are Dr Brian Cox quality! AWESOME!!!!!!!!!!! Hubby and I are watching the videos, doing the meditations – and gaining a much deeper understanding of ourselves, those around us and the Universe.
Sending you all hugs, love, light and peace,