The February Flop

Hey all 🙂 hope everyone is doing well! How was your Feb?

My February was a bit of a flop really but its a new month and so possibly a new flop haha. No…but seriously….Feb was a bit of a flop. I had my second Zoladex injection, which by the way was so much more painful than the first one! They have also prescribed me HRT because boy have I been getting hot flashes, all you people out there that have gone through/going through the menopause …. ya’ll need a medal ! Imma gotta do this s**t twice!!!!! So far so good with the HRT though, well…when I remember to take it lets say.

So that’s Zoladex update done, next update CHRONIC PAIN MANAGEMENT ! Finally I have been referred to this place, I tried several years ago when I was diagnosed with FND but didn’t win that one and then a few times after; in all honesty I did give up trying because I was literally being shut down, left, right and centre. I had my first appointment over the phone with a Chronis Pain Psychiatrist which was eventful to say the least; for now I am not going to go to much in to detail with some things they were thinking like its something I’ve always known deep down but what comes with it is a stigma, a label as too say which then comes judgement. To be perfectly honest with you I’m quite fed up with being judged 24/7 so I’m unsure if I am going through with certain things they have proposed. Other than that they were very helpful and again confirmed none of this pain I experience everyday is just “in my head” despite what many people think. (I’ll probably forever need to hear this because I have always been told its in my head like forever).

That’s CPM update! oh and they have also booked my next lot of appointments with them in advance and also been referred to CPM Physio with them too.

For the last 2 months I have been getting headaches everyday, they are always there and then its like a sudden smack over the head with a spade. I am able look at lights, walk around etc but the pain is just awful, it feel’s like the only way I can get rid of the headache is to bash my head against the wall; don’t panic…I have done that ! I finally got into the docs this week gone and turns out I am having cluster headaches, also have high blood pressure for the FIRST TIME IN MY LIFE !!!!!!!!! Doc is sending me for a head scan to rule out anything sinister and looks like ill be referred back to psychology. So I walked out of the docs relieved I suppose and p****d off all at the same time. Haha.

In hindsight my February Flop I suppose isn’t really a major flop….but still a flop. My Nan who lives 4hrs from me is in hospital due to her docs failing to help her on many occasions; don’t panic though she is ok and hopefully now they will be on top of the issue she has.

How’s my March going to be I wonder …… Well my car is due for its MOT this month….scary stuff. It’s started making some dodgy noises which I’m pretty sure its the brake pads/disc or both. I keep saying I should put myself on a basic mechanics course so I at least know what the issue is and not be fobbed off by sweaty people in greasy overalls !

Flopsy our rabbit turned 2 this month….well… that’s a lie really….she technically turned 2 in January at some point but we are not certain on the date exactly; so we celebrated her GOTCHA DAY as her birthday. Yes she had a cake, Yes she had a cute party hat…yes of course her sister was only there for the party food !

Of course Imma share some Pics with you….

So all in all February was a bit of a rollercoaster, there were days where I have felt really good however there was more bad days in February; health & pain wise that is! Oh and February has seen me being prescribed 2 new medicines that I have never had before one of which really sends my into orbit haha.

Lets see what March brings !

Peace Out!

Ciao, Adios, Bon Voyage

x

3AM THOUGHTS

Good morning you lovely bunch, hope your all doing ok and life is treating you all well.

Now, I don’t know if it’s just me, but lets just say around 3am in the morning I suddenly think of the most random things I could blog about and tell you guys, in my head at 3 in the morning I have typed it all out and erased it and started again about 10 times and then actually come up with an amazing post, to then just say to myself I’ll get the laptop out in the morning and write exactly that !!! ……. (the morning comes and well …. as you can gather I do not get said laptop out and write the amazing thing I wrote in my head the night before….#rookymistakerightthere)

I also think of other random things at stupid o’clock in the morning; things like:

• I wonder what I was doing this time 5 years ago (to which I reply to myself….exactly what your doing now you turnip !
• Or things like ……. I wonder who discovered the Giraffe and why they named it Giraffe

The brain is a fascinating complex organ…. wouldn’t you agree ?

Speaking of the brain …. how are all my fellow FND warriors doing ?

I don’t really have much update on the FND front to be honest, my symptoms are all still the same however the past 3 weeks I have noticed I do have ticks every other day, not always a major tick event though! I tend to only make sounds too rather than saying words, expect the word boom ….. yep boom … after making a tick tick sound….so it comes out as tick tick boom ! (got to laugh or ill sit there crying I suppose haha )

Does anybody else experience ticks with their FND? I’m just curios as when and why you think they started for you?

Oh…slight back track…..another thing I was thinking about the other night at stupid o’clock in the morning was: I ask you guys a lot of questions throughout my posts and also mention about you guys contacting me if you would like to etc and I suddenly thought well how on earth are you doing to do so……..so…..here is now an email address if you would like to get in contact etc. and answer the questions and other things I talk about throughout my blog if you wish too. journeywithmeFND@outlook.com

Ok….back to the previous convo…..FND has been going alright I guess for me, steady lets say. Although I did burn myself (accidentally of course) whilst pouring a cuppa the other day, (first time in ages this has happened may I add). For those that have been following this blog from the beginning you will have gathered how accident prone I am, (some of it is the FND but some of it is just pure clumsiness on my part haha) I immediately ran the cold tap on it for 20 minutes but if I’m totally honest I don’t know what stung the most…the actual burn itself or the freezing cold water gushing out of the tap onto my scorched skin ! I now how some more burn cream as I realised I didn’t have any on me (in the words of Homer Simpson … DOH).

So all in all …. FND has been perfectly fine this month (she says…whilst thinking about any other FND mishaps to tell her fellow readers).

Has FND been treating you well? do you have an interesting story you want to share with the world when it comes to FND or any other health condition?

(I try not to speak a lot about FND but it is why I started this blog I suppose)

Before I dash off I noticed on one of the groups I am on on Facebook regarding FND someone was wondering about some FND specialists centres in the UK. I thought I would share with you all this bit of useful info…..

Don’t quote me on it but I’m pretty sure you can ask your normally GP to be referred.

BRISTOL

ROSA BURDEN CENTRE, SOUTHMEAD HOSPITAL

• OverviewAt the Rosa Burden Centre we have psychiatrists, therapists and nurses with lots of experience working with patients with these symptoms.
  We have an outpatient clinic in which we carry out assessments and provide guidance. We provide outpatient psychological treatment (CBT) for suitable patient.

LONDON

WOLFSON CENTRE FOR NEUROREHABILITATION AT QUEEN MARY HOSPITAL IN ROEHAMPTON

• OverviewThe inpatient neurorehabilitation programme is based at Queen Mary’s Hospital, Roehampton as part of St George’s Hospital NHS Trust. It provides assessment and treatment for FND across a variety of inpatient and outpatient settings. We routinely diagnose patients with FND in outpatient clinics, as well as on the acute medical/neurology wards at St George’s. Patients move through our pathway receiving rehabilitation for FND either as an outpatient or after being admitted for inpatient neurorehabilitation.

LONDON

THE NATIONAL HOSPITAL FOR NEUROSURGERY AND NEUROLOGY

• OverviewThe NHNN has a long-established treatment programme for patients with FND within the Neuropsychiatry Department.
  Patients may be referred to our MDT Outpatient Clinic for assessment of suitability for treatment. The referring doctor needs to have made a positive diagnosis of FND and to have explained this to the patient. We do not provide a diagnostic service for this condition. Patients will be seen by a Neuropsychiatrist or CNS-Neuropsychiatry and one or more therapists (Cognitive Behavioural Therapy, Occupational Therapy or Physiotherapy).

LEEDS

NATIONAL INPATIENT CENTRE FOR PSYCHOLOGICAL MEDICINE (NICPM)

• OverviewThe National Inpatient Centre for Psychological Medicine delivers biopsychosocial holistic care for people with complex medically unexplained symptoms and physical / psychological comorbidities.

LEARN MORE

There is also quite a few OUTPATIENT centres throughout the UK. Here is the link to FND hope UK website who have all the info you need https://www.fndhope.org.uk/about-fnd-hope/fnd-hope-uk/fnd-treatment-uk/

On that note, I’m going to love you and leave you…..until next time…

Peace out !

Ciao, Adios, Bon Voyage

xx

WHAT A YEAR !

Firstly I’d like to apologise as I have been absent from this blog for quite some time now, various reasons really, health, life in general and main thing is MIND BLANK ! Not knowing what to write about, what to talk to you guys about, but here I am and today I am just going to update you on all things FND with me I guess.

Hope you have all had a fantastic year, well as much as you could (minus the whole COVID Situation) who would have thought COVID would still be around as much as it is a now there is a new variant (which by the way looks like an anagram for NO CRIMBO…..just saying…..hmmm…..). I have now been double jabbed (whoop whoop go me) My first COVID vaccine I felt absolutely awful; in and out of bed for a week and a half, felt super weak and tired which in turn effected my FND so that was fun. For those of you who have FND or any other health conditions, did you find the COVID jab affected your condition too?

All things FND are going ok with me at the moment, stress is still a major factor but we can’t go through life without any stress can we now ! …… Ticks have been bad over the last couple of months, they tend to come in episodes, not saying words really thank goodness, its just noises so that’s always entertaining……(but it’s so draining ! and painful ). Still on the meds I have been on for the past 3 years, nothing more really they can do as I have tried CBT therapy had physio therapy and neurophysio therapy but I keep plodding along as well we have to don’t we.

Hope all is ok with you guys. !

let me know if there’s a specific subject you want me to cover in my next post.

For Now ….

Ciao, Adios, Bon Voyage

xx

2021 IS HERE

Let me start by wishing you all a Happy New Year, and thank you for those who have followed and supported this blog throughout 2020. (Even though I didn’t post as much as I should of, I am sorry)

2020 was a rollacoaster of a year, but through it all I must say I have many memories that will stick with me forever. Minus COVID the year 2020 bought a lot of joy and happiness to us. My partner and I have spent so much time together, we have been on various adventures including the wonderful Stratford Upon Avon, Warwick Castle, camping in Somerset (even though it rained solid and we did have to pack up a day early!!!). We met up with an old friend from our season work down in Seaton and of course our beautiful Niece was born.

When I look back on 2020 I will remember all the good that come out of it. Many of us sadly lost family and friends, myself included. We have spent the majority of the year being told we can’t go out, and then we can go out. As I always say everything happens for a reason and to every negative there are plenty of positves, its just finding them.

Our Christmas was quietand different to say the least, let’s all hope that 2021 will be different. I hope you all had a good Christmas as much as you could, NYE was very different this year, very quiet however my partner and I made sure we made and effort, got dressed up and played some games and saw the New Year in together. (We did shout Jamangi when countdown came to one, in hope this game would be over for 2021).

So thank you for reading, thank you for your support and lets see you on the flip side!!!

Finally got the letter

So a while ago I re applied for PIP….a couple of days ago I finally got a text through to say a telephone appointment has been booked due to COVID they can’t do face to face which I fully understand. You would honestly think it would be a relief doing it all over the telephone but I thought id share with you exactly how a simple text followed by a letter actually effects my FND.

After receiving the text I had mixed emotions, like dont get me wrong im thrilled I have finally received the appointment but my body instantly could feel the stress, my legs slowly started to shut down, weakness started 5 minutes after reading the message, tremors appeared and slurred speech and stuttering presented itself. When this happens I honestly go into shut down each symptoms i get appearing one after the other until I cant function at all. For those of you wondering why? Or thinking its just a text, yes I’m fully aware of the situation but my brain is not, my brain does not know how to take that information so it goes into meltdown. Once my body slowly starts coming back to normal a simple task like standing up becomes impossible without aid, asking for a drink comes out backwards because my words are just so jumbled up.

4 days later and I have just recieved the official letter through the post and guess what we are now back to square one, what we were going to do today has now had to be put on hold, my legs are painful it feels like my bones are being crushed so I thought I’d quickly get this down on here before I shut down and can’t remember what planet I’m on. Honestly guys FND can be a pain (literally) but I suppose all of this will be worth it in the end (well we like to think so).

For anyone contemplating whether to attempt to go for PIP or not then I would say do it, it is worth it in the end, as much as the stress leading up to it and even filling out the forms it because lets face it we don’t always think we are “bad enough” to go for it, its not until I first filled out the forms that I realised how bad my condition is and how it effects me on a daily basis.

Peace out!!!

Ciao, adios, bon voyage

Xx

(Stay safe)

FND is Like Cluedo !

Lying in bed a few nights ago and it suddenly come to me that FND is like playing a game of Cluedo. 

Now your probably thinking has this girl gone phyco or what! 

When you sit down on a Thursday night family night (I say Thursday because thats what my family decided on ), and you cant decide what your going to do. Is it going to be lets see how many times Mum can get on the Karaoke? Or is it going to be board games?. Personally im not a fan of the karaoke situation, its the awkwardness that comes with karaoke that im not a fan of. I literally feel like im standing there looking like that talking orange (has to be a red orange because that would be the colour of my face when participating in karaoke #embaressmenttomyself. 

Back to the board game night; sorry I do tend to go off track. 

Cluedo the game of clues.

 FND the game of clues. 

Comparing FND to a game is no fun at all but when you sit back and think about it, it kind of works. For example your arms decide they are not working anymore … but why? So you ask yourself was there any “pre warning” could something had triggered this wobbly arms attack. 

My guess is that if you find all the clues just like in cluedo you could be on to a winner with solving the FND cluedo game. (I for one am constantly trying to find clues #secretobsession) 

Instead of getting stressed; which makes situations 10X worse as an FND fighter, why not turn it into a game of cluedo. 

Let me know if you find any facinating clues…Lets power on through this guys and girls. 

Peace Out !

Ciao, Adios, Bon Voayage. 

Xx