Functional Movement Disorder Awareness Day 25th March 2020

I know you will all be aware that our “Functional Movement Disorder Awareness Day” is on the 25th of this month, I have really been struggling to get into it this year. With being so ill lately and in agony with my back, I struggle just to get up and get through the day. This is alongside everything else I have going on, and I know I’m not the only one.

But good or bad, well or ill, I hope that we do all pull together. By posting on social media as much as you can throughout the day of the 25th of this March, and use the # hashtag # #VOICES4FND #Voices4Fnd #Voices4FND you can hashtag as much as you want!

Let us get people noticing our disorder as much as Multiple Sclerosis and Parkinsons.

Did you know that of all the people seen in neurology departments, approximately 50% are now diagnosed as Functional !!! It is pretty shocking when we all know that hardly anyone has heard about our disorder!? How are we not noticed, with our walking sticks, our wheelchairs, our mobility scooters, the people who walk but shake, spasm, or fall and have difficulty getting upright again. But we all KEEP GOING , because we have no other choice. We get up, and we get through another day in any way we can. We need to continually grow awareness, others won’t do it for us

But we are not silent anymore, we are becoming more known about, across the world. This year we are linking up with Australia, they are joining us for the first time to help raise awareness too! The more the merrier, the more posts with hashtags # the better, and the farther our hashtags go the better. #VoicesForFND so get on your phones or your iPads, tablets, laptops or computers, and type away on your keyboards ⌨️ until your finger ends have flames coming off them! 😁

Let’s make good use of Facebook Twitter Youtube Instagram LinkedIn and all the other social media sites you can find to use, let’s get our “Functional Movement Disorder Awareness” spread as far and wide as possible!

Let’s make the whole 🌎 world 🌍 aware of our functional disorder! “Functional Neurological Disorder” is the umbrella term under which the other parts come, of which “Functional Movement Disorder” is one, so is “Non Epileptic Attack Disorder” also known as “NEAD”. There are lots of other symptoms, here are a few to give an example of how far and wide this disorder is! “Weakness” “Tremors” “Vision problems” “Memory problems” “Paralysis” “Sensory Disturbances” “Swallowing problems” “Urinary problems” “Spasming” and other “Abnormal Movements”.

Let’s get ourselves on the map! 😁

Thank you all in advance, you are already warriors from fighting #FMD #FND but I wish to thank everyone who does just one post at least, because it could be your post that gets noticed by someone who can really highlight our fight and bring it to the forefront beside MS and Parkinsons.

Thank you all folks, for reading and always going above and beyond, take care X

Continuing on with our journey

Our journey continues, though we may have stops along the way. A few little trip ups but then time to get better, to continue on with our journey. Do not let the trip ups stop you enjoying life, they all end up behind us, so belong in the past.

Now look to your future, and what you would like. Happiness, contentment, reduced spasms, reduced pains, reduced seizures, better sleep, better understanding, easier living within your own skin.

Look to the future, aim for where you want to be, how you want to be. Try to make your dreams come true, but do it in small steps. Nothing happens fast, but having something to aim for helps. Even if that aim is to sit and enjoy a film and glass of wine at the weekend.

Dreams and wishes are whatever you wish for, everyone is different. Big or small wishes, big or small dreams. It is nice to have something to look forward to. So hold on in there, life hasn’t done with you yet! X

Not a good day today

I feel so ill today, I haven’t felt this bad for a while. I’ve got bad head pains and my heavy head feeling, and my forehead is hot and sweaty 🥵. I’ve been having problems with breathing and pain on left side of my chest for a while, which is still concerning me.

I was even sent to A&E a few weeks back. My Dr actually rang for the ambulance while I was in my appointment, it was scary. I was taken in the ambulance, where they did more tests for my heart and gave me oxygen. It was a very long day, left for hours on the corridor along with other patients, some on trolleys, some were really old and didn’t know what was happening, they cried out it was awful. By the time I was seen, they decided I could go home because I wasn’t having a breathing attack anymore and my stats were back within limits! I don’t think they hadn’t even had time to get results back for all the blood they took from me?.

So today’s not a good one, I am not doing so well. I have times where my throat spasms and pulls, I don’t know if it’s anything to do with my current breathing issues but something to keep in mind.

But I have had lots of appointments to look into it, and I am reassured by how the NHS have been looking after me.

I woke this morning and really didn’t feel right, I watched television for a while but the noise was hurting my head. I had to give in to my broken brain, and turned it off. My muscles ached, my bones ached, I was weak in my right side through my leg. I am finding my right foot doesn’t move much, not how I’ve asked it to inside my brain. So my broken brain is not sending the correct information again. My movements are not working how my brain is asking. I’ve had this in areas of my body for years, I thought it had settled down that nothing would change anymore. Unfortunately it seems I was wrong, as I seem to be having problems with movements again.

I see my Dr in the morning, not for this problem. They have the results from the MRI scan of my back, so it’s a follow up appointment. I don’t know what happens after?

I saw my Surgeon recently, who has helped look after my back over the years and he has now decided to refer me to The Walton Centre in Liverpool. A very long way to go for an appointment 😟 but they have the Neurosurgeons and other Drs there who can look after me better. They should be able to help me learn to live with my pains and problems. I have no idea how long it will be until I get seen by The Walton Centre but he said he was referring me as urgent, but it could be months! Another waiting game 🥺

I am tired, my left eye is getting worse and I have blurred vision more often. But my left eye aches a lot and I get a painful heavy head, it was one of my first problems and it continues to be an annoyance to me. I find it difficult to read books, and I love to hold a book a physical book in my hands. But I am having to use my iPad or phone more so I can enlarge the fonts, or enlarge the words onscreen. I even forgot at times, and when reading a book or magazine I try to with my fingers to enlarge the page. As soon as my fingers contact I think oh how silly of me! I’m sure I’m not the only one who does this! 😄

Anyway folks thanks for reading as always, and take care x

Why does the system take so long?

Why is it you can go and see your Dr who is great, and tells you they will send a referral for your pain injections. Only to find out from a letter two weeks later, that they have referred you to a different hospital, to be seen by a new Consultant, for a new assessment?!

Therefore not getting the injections you are waiting for, and bloody well NEED NOW?!

I went onto the website and looked at the new self-booking process, where it told me the normal wait is 15 weeks for an appointment, yes you read correctly, 15 weeks!

So I decided to ring the phone number and see if this was true.

Was it a new assessment appointment? Yes.

So it wasn’t the pain relief injections I need for my shoulders? No.

Were there any appointments? No.

What happens next? She has put my name on the waiting list, and informed me I should be contacted within the next 2 weeks. That if I am not contacted, to then ring another phone number which she gave me, to see what was happening.

You see, I now have ‘Chronic Bursitis Osteoarthritis’ in both of my shoulders, at the ‘Acromioclavicular joint’. In our bodies we have more than 50 bursae, which are tiny little sacs that give out synovial fluid which helps by making joints and muscles move fluidly. Though if bursitis occurs, then the bursae becomes inflamed, meaning the motion of joints stops moving fluidly, and becomes very painful.

Which also means I struggle walking and getting around. By using my walking sticks they send shock waves up my arms to the shoulder bones, which makes it worse increasing the ‘wear and tear’ and giving more pain. It is a never ending cycle, and will never go away, it is looked after and helped by ‘Ultrasound Guided Injections’. Then as you never know when the injections will wear off, or depending on how much I use my arms, when the pain will start again. This means I am unable to know when to ask for the injections, until I am in crippling pain.

Osteoarthritis runs in my family, which is why I also have ‘Degenerative Disc Disease’ or (DDD), in the lumber area at the base of my spine. It isn’t actually a disease, it is just the name given, so my bones rub together.

Back to the way of how we are now to book our own appointments, seems a bit like a ‘let out clause’. Each time you wait that little bit longer, therefore nudging us along until it gets to the 15 weeks you would have waited in the first place, for an appointment.

Now don’t get me wrong, I think we are very lucky to have our NHS that looks after us. I worked in the NHS so I know the incredible workload everybody that works there has. I experienced it in the 4 years I worked there, until I became ill with ‘Functional Movement Disorder’. It has even been said that the stress of my job, could have been a part of the jigsaw that made me ill. Who knows? 🤷‍♀️

But I question, why should I end up having to ring everywhere, until someone agrees with me. So that they will send a note to the Dr, to refer me to my original Radiology Dept for my injections appointment?!

By which time I am crying, in frustration and pain! 😭😭😭

I just have nothing left, no energy, just pains throughout my body.

Then the medical professionals, and government, question why we get depression. If they went through all the hoops we sufferers have to jump through, they would understand immediately 😐

Thanks for reading folks, and look after yourself and your loved ones xx

Thank you!

Hello, I just want to say a quick ‘Thank you’ to everybody who helped in raising awareness of our disorder for our awareness day on the 25th March.

But also for the continued help throughout the time period before and after, and the support and help that is on going.

Everyone of you who helped, in anyway way large or small, you are all stars!

We know it is a struggle getting our Functional Movement Disorder to be more known about. For us to try and teach more people about it, and to get the wider awareness out to more and more of our medical professionals.

It may not seem much to some, but I am so very grateful to one and all who have helped in your own small ways.

For anyone who still wishes to send their story, and any photos they wish to go with it you can use the contact page. If you just want to send a few lines of how you cope by yourself to let others know your struggle, you can still use the contact page. Or if you are a carer would like to say how you feel caring for loved ones, what it does to you when struggling to get drs to understand, you can have your say.

We can all help the fight of growing awareness, and how it affects the many lives, not only the sufferer, but those around them. The contact page is there for just that, so contact us any story and we will try to get the much needed awareness raised. Please add if you are happy for your name to be used, or if you want to stay anonymous.

As always I send you all my best wishes, thank you for reading, and I will catch you later folks 😊 XXX.

Working together #WeCare4FND

“Awareness Day” gets ever closer!

As our awareness day gets ever closer, you can find lots of information in the link below 👍

https://www.bit.ly/2ChejtV

Remember you can be a part of awareness day! 😁

AWARENESS DAY 2019

AWARENESS DAY 2019 is coming up on the 25th March.

This year we want to hear stories from carers, friends, family, who help look after a sufferer.

How does it effect you and your life?

How does it effect your relationship with the person sufferering?

You can have your voice heard, and tell us your stories, just use the contact page.

Please help raise awareness by sharing this post, or printing off the flyer and leave some in your local doctors, or even hospitals if you are near 😊

Lets raise as much awareness as possible,

THANK YOU! 😁 👍 😊 🤗

Awareness Day 2019!

Hi folks, yes it is coming up to our ‘Awareness Day’ again. This year it is on the 25th of March, and we are going to try and look at how carers help many of us sufferers.

We will look from the view of the sufferer, the way it makes us feel. But we want to know how the carers see it, how do they feel having to care and help us in the many different ways required. We know being cared for isn’t easy, but we also know that being a carer is not easy either. Which is why we want to show thanks to all our carers out there young and old, by bringing them to the forefront this year.

You can show it too by using the hashtag #WeCare4FND or #WeCare4FMD in any posts you make on social media, it is your personal choice but either raise awareness and mean the same.

We hope that some of you would like to share your stories either by writing or short videos. You can send them to Functionalsufferer@gmail.com or by using the contact page here on the website.

Let’s push ever harder, and grow our awareness folks!

#FNDAwareness #WeCare4FND #FMDAwareness #WeCare4FMD

Thanks for reading and as always, take care folks 👍😊

Did you know?!

After posting how I was eventually diagnosed with Fibromyalgia last year, I have been looking into it more.

I found another poster, which shows more points relating to areas of the body that are impacted by having Fibromyalgia.

Image from Google images.

As you can see from the poster, there are many areas of the body that can get inflammation. It surprised me to see how it can impact on our bodies! I can relate to all of these points, which is even more scary to think about.

I have been ill for years, and you think you cannot get worse. Sadly of course you can, but I try not to think about the underlying problem anymore but try to just get on and work through it. I am disabled and I am not going to become able again, so I have learned to live with my problems. But maybe that’s the problem!?

Even though I cannot walk, and my back problems are not from FMD. The time it took to eventually get the drs to scan my back, must have had an impact on how bad my back has become. If they had not kept saying it was functional, then maybe I would have had my back scanned earlier and there would have been something they could have done, to help it from becoming this bad.

However, back to looking at the problems from Fibromyalgia, maybe we need to insist on looking at each symptom separately. That way we may be able to stay on top of our pains, and cope enough to move on to sort out the next symptom.

I truly do think we need to keep asking our drs to look only at the one problem we have at a time, and not to say it is part of our functional disorder. As by doing this the symptom then can get forgotten, and therefore not helped!

Take care as always folks x