Just When You Think Things Are Getting Better!

Yes, just when you think things are getting better, oh wait a sec… Did I even think? Jeez this illness is so frustrating! Those people that know, me know that I’m usually a very active person, but this illness has really knocked me off balance, pardon the pun! This latest episode has really knocked me on my arse, this is a lesson to be learnt.

Mental burnout is no fun….

My wife and I have recently found something that we never thought possible, a community of like-minded people from all walks of life joining together in unity for the better of mankind. Yes, this almost sounds like a fairytale but believe me this is what we have both been searching for for the duration of our relationship, some 20+ years. The community I talk about was founded in 1968 and have been working hard together to make a better future for everyone. My wife and I are over the moon that we have found this opportunity and inevitably want to know more. This is where this latest problem has arisen. I am the type of person that will research, research, research, until I find every bit of detail for such a plan. What I didn’t realise was that I was completely ignoring my illness! No, I don’t want my illness to be my first and foremost concern when trying to plan for our future, unyet there it is, kicking my ass when I turn my back on it, when I’m least expecting it, it’s just there teaching me a hard lesson in life.

There I was sat content looking up information on travel visas to India when all of a sudden I noticed that my vision was starting to depreciate, a small blank spot where I couldn’t read any letters or words. I mentioned it to my wife as I’ve known these symptoms so well, for so long. I decided to take a brief break and put the kettle on for a brew. It was only a matter of three or four minutes and the sparkles and kaleidoscope effect aura decided to set in. Yes, after two weeks of having no aura symptoms, only ‘mild’ migraines in that time, here we go again! A full blown aura migraine and it was increasing rapidly. I had completely ignored taking time out from reading and using my iPad. It seems like the medication had given me a false sense of security whereas I wasn’t taking precautionary time out to give my eyes a break.

Take time out to breathe……

Annoyed with myself, I knew I had to take drastic measures so as to try and stop, or reduce the pain and suffering that was to come. I laid out on the bed just to rest my head and tried out a deep breathing exercise that I’d learnt from the Internet. I guess you could consider it to be a mindful exercise, as I was picturing the aura slowing down and disappearing into a mist. Within the space of a couple of minutes the kaleidoscope effect was indeed slowing down. At that time that is all I remember…

I awoke to the sound of the room door closing and in came my wife and sat on the bed. I lifted my head and rubbed my left eye as it was feeling quite numb, asking her what time it was. She replied saying that it was 6 pm, which confused me greatly as my migraine had kicked in at around 2:30 pm! Where have the last three hours gone? I simply had no recollection whatsoever. My head was feeling very numb, delicate to the touch, and it felt like I had lost three weeks not just three hours. I was feeling absolutely famished, so hungry I could literally eat a horse! It was time to eat…

After our meal I sat and contemplated what had happened, while nursing my very numb head. This latest episode of vestibular migraines had really knocked me back and made me realise how I must take better care of my health and not just take life for granted as if I didn’t have the problem in the first place. I now realise that this illness is going to be a bit of a bitch to beat. Having to suffer the symptoms of vestibular migraines is bad enough but I realise the triple PD symptoms are there to stay. Having to live a life of constant dizziness is no fun and I’ve worked really hard recently to try and reduce the dizzy spells. After just three weeks I was starting to feel some progress but this is the last thing I need right now. I remember clearly the very bad vestibular migraines that triggered my triple PD symptoms in the first place, under no circumstances am I intending to allow them to get any worse. Just for today I surrender to my illness and will take plenty of rest to try and recuperate.

I guess we all live and learn, but at least I live to tell the tale. Yes, I’m here to fight another day and so I shall!

Difficult Dayze…

So the last couple of days have been somewhat of a challenge. I’m not one for airing my dirty washing in public, so to speak, so let’s just put it this way, my wife and I have had quite a tough time of late due to a huge number of issues that have escalated over the years. My recent health problem I think was probably just the cherry on the top. Unresolved problems that inevitably get swept under the carpet will always raise their ugly heads when least expected. In order to deal with problems that escalate out of control, sometimes it means not getting under one another’s feet and on this occasion I decided that enough was enough and I rang my brother to come and pick me up for a break over at his place, some 10 miles away.

Changing times…
Changing times….

My brother and I have had many fallouts and not seen eye to eye over the years since being kids but over the last 7 years we’ve managed to rekindle some sort of a brotherly relationship and at times like this it’s very much appreciated to know that they are there when they need to be. The weird thing is I didn’t go to my brothers for him to take sides as I clearly know that his way of dealing with issues is almost completely opposite to the way I deal with issues. Spending time at his house for a couple of days gave me breathing space and time to sit and think to see if I was at fault, in my opinion, but at the same time not forgetting to take my wife’s opinions on board looking at them from her perspective. I feel this is the only fair way to try and resolve the problem especially when tempers have become frayed, timeout is essential.

We have been together nearly 20 years and our relationship has never been aggressive or physical but arguments and frustration has been part of the problem mainly due to trying to do the right thing when raising children. The first major breakthrough for me in this time was the realisation that me and my wife had never had the time alone for each other without there being major problems, concerns, bills, debts, et cetera, to deal with.

We are now child free as they have fled the nest and we have the perfect housing situation. Our finances are much more organised, putting us in a position that we’ve never been in before. This is mainly due to our involvement in the Cryptocurrency world which has enabled us to have savings, something we found impossible to achieve in the past. We have always pooled our money together and paid debts and bills first before any form of entertainment or treats for any of the family and me and my wife always came last, if ever at all. We are now in a situation where we can enjoy the fruits of our labour, but the problem was we had not discussed how we were going to feel knowing that we were now in the situation, e.g. where we could go out and spend money with no worries or concerns. We trust each other impeccably that we both have each other’s best interests at heart and would never frivolously spend money. It may seem crazy to some but such a minor issue like this had created such frustration and confusion for us both and we didn’t know how to approach the problem.

So, feeling confident I had to come to a very reasonable solution of how to put things right, however wrong things seemed to be between us, I decided to return to our home to discuss the matter but only under agreement that we were to remain calm and collective and understand that we both have an opinion, even though they might be differing. It seemed to be one of the major issues that my wife had as she felt as though she never had a say in any decisions, which hurt me greatly because I felt that I had done a very good job over the past years in dealing with so many matters that had created major problems and were resolved. The first couple of hours of being home were quite tense, still having minor ups and downs and disagreements that could quite easily have turned major again, but didn’t. We took it in turns to try and express the way we were feeling towards each other and it’s not easy when put in that situation, unyet we both instinctively know that it is a deep love for each other that enables us to keep trying to resolve these problems. Cutting a long story short it became apparent that my wife was struggling to know exactly how to voice her opinion, something that I wasn’t aware of. This lack of awareness together with her lack of ability to know how to do such a thing was a big breakthrough and once I realised that this was a problem that gave us the golden key to help each other. So there was no blame pointed either way anymore just a realisation that we could work together and resolve these issues.

I consider myself to be a highly sensitive and intuitive person, easily being able to detect happiness or moods in anybody. As soon as my wife realised that this problem was mainly due to the fact that we’ve never ever had the time to sit down and discuss things properly it soon become apparent that we needed to learn ourselves as much as we needed to learn about each other. What a breakthrough this was! Finally my senses kicked in and I could clearly see that her mood was rising and the smile was coming back to her face.

Since having the time to discuss things thoroughly together in a calm and peaceful manner one of the main things that became apparent is that both the husband and the wife are quite different and have their separate roles in life in order to help and support each other and it wasn’t just a simple fact that one was trying to take the power away from the other or over-rule the others’ decision. Throughout our years when the children were growing up due to my long-standing health condition I was mainly the person that stayed at home and did most of the housework, educated the children, insured that bills were kept to an absolute minimum because my wife was the only one that could be the main source of financial income. For obvious reasons everything has changed due to the children moving on with their lives, and yet we didn’t know our role anymore, it was really as simple as that. We also didn’t know how to approach each other in order to find out who we were, who the other person was and how we were going to go forward in our marriage as a couple rather than a family of six.

I can gladly say that we are now at the point where we realise that we have much more freedom, not only as a couple or as individuals but financially too whereas we can both spend money on the things that we enjoy doing without having to look to see if we can afford it or look for the others approval due to previously unpaid debts et cetera. What a great position to be in life now as we do understand there are very few people that can honestly say this.

As I mentioned at the beginning of this post I don’t air my dirty washing in public, and the reason for posting this message on a public blog is in the hope that other people can maybe take the time out and realise that life can go on, without the destructive confrontations that can easily be avoided if only we take time, something that appears to have been taken away from us over the years. We are all far too busy in our lives nowadays to even think straight so I feel it’s important that everybody is aware that such issues can be resolved in no time at all if only we give ourselves the chance. To finish this post I can honestly say that we are at a position now that the love we have for each other has never been stronger. I sincerely hope that if any of you guys that are reading this post are in a similar situation you can turn round in the future and state the same.

The Importance Of Keeping Active…

It’s easy to become immobile when suffering from a condition that affects your general health and staring at the same four walls day in and day out can soon affect one’s mental health. I decided today that I had to do something different, not just a short trip to the local shop with Sarah to accompany me, but something different where I can actually relax and enjoy my time. A few months ago, before my health deteriorated so bad, I’d been out and bought a three man tent in the hope that at some point this summer my wife and I could get away for a short break. It’s now clear that that isn’t going to happen any time soon but I decided to take the plunge and erect the tent in the back garden so that we could enjoy some peace and quiet this afternoon.

Nothing like a good brew!

I knew beforehand that this was going to be quite some challenge, even though it usually takes only 10 minutes to put up, I knew it was going to take me a little longer this time around but was willing to give it a go all the same.

I feel its times like this that my wife thinks I’m completely bonkers but over the years she’s become accustomed to my strange ways! Knowing that I can’t bend down or turn around quickly without becoming dizzy I started unpacking the tent and sorting out which bit goes where. It wasn’t long before the dizziness started to kick in but I was determined to complete the challenge and tried taking it in my stride. What usually takes me only 10 minutes, took me just over one hour to complete due to three episodes of dizziness. Obviously frustration started taking hold but its times like these that I have to challenge myself and become accustomed to as I head into recovery.

As Sarah was due to start work at 6pm, we decided to order tea in from the local pizza shop. I dug out the camp stove, kettle, mugs and the bits and bobs that we needed to make a tea and coffee to go with our meal. We also have a spare duvet in the bottom of my wardrobe which I bundled together and threw in the tent to chill out on. Our meal was only 15 minutes away so we put the kettle on and kicked back to listen to the garden birds singing their hearts out. What a glorious sunny afternoon it had turned out to be.

So there we have it folks, it doesn’t take much to make me happy. Sarah has now gone to work, her belly full and ready to serve up fish and chips to the folk of Scunthorpe, while I am laid out here in the tent enjoying a nice mug of tea writing this post out to you guys! The birds are still singing gracefully and one particular Robin keeps popping his head up nearby to see what I’m doing. For just this moment in time life ain’t all that bad after all!

I sincerely hope you’re all having a similarly good day too!

Namaste

Kev – M0LYF

The Trials & Tribulations Of Living With An Invisible Illness

Living with an invisible illness is nothing new to me. After suffering a back injury from a factory accident approximately 30 years ago, with little to no conclusive diagnosis or relief in all that time, the frustration and pain of justifying your actions to other people over the years never gets any easier. I quickly developed IBS symptoms and fibromyalgia, which was only diagnosed after extensive medical intervention and a cocktail of prescription medication. After many months of tests, prods, and pokes, the only form of relief the GPs could offer was “a lifetime of codeine “. Considering my previous abuse of amphetamine sulphate, amongst other illegal drugs, I felt it wasn’t a good idea to start taking codeine permanently due to its addictive nature. It was at this point I decided the medical establishment didn’t seem to be working in my favour and stopped attending any further appointments. I’d literally had enough of feeling like a guinea pig in a Science laboratory.

So for all these years I’ve battled on, hiding my symptoms, dealing with my emotions, having to adjust my lifestyle to work around my condition, I can honestly say it has become quite normal. It is only since coming out of work recently and having the time to sit and think about my health have I come to the conclusion that it is absolutely not normal at all! Maybe, just maybe, it’s time for me to nurture myself back to good health. I feel this is going to be quite a challenge as growing up in such a way makes you quite a passive person, willing to accept anything in life just to please other people. How can anybody describe how they feel to somebody when in actual fact they don’t fully understand the illnesses they have? Vestibular migraines, together with triple PD, have really given me a challenge!

The Internet provides you with a multitude of avenues to take and I find YouTube to be a fantastic resource for finding out about my conditions. I’m also aware that one can be led down a very winding path by watching videos from a variety of sources, but obviously I try to stick to those professors and worldwide medical establishments that have clearly studied these problems in depth and come up with positive results. As much as it causes great frustration when colleagues friends and family ask about my health as it is almost impossible to describe your symptoms every time, I am learning that I don’t have to explain myself at every opportunity. I feel one of the biggest challenges is to overcome the unnecessary feelings of guilt when this happens, it’s clearly not my fault that I feel the way I do. Watching some very informative videos has taught me that my recovery back to good health is going to be a slow and steady progressive road forward, one that I’m more than ready and willing to travel!

There is a very famous saying that dates back to the 6th century:

A journey of 1000 miles must begin with a single step!

Namaste

Kev – M0LYF

Form Filling & Paperwork Woes,

Research shows that anxiety plays a big part in the lives of migraine sufferers, which is understandable considering the pain patients have to endure. Those readers from the UK will know that the Department of work and pensions offer financial support to those that their daily lives are affected by illness. This benefit is known as PIP, personal Independence payment, and is awarded to those that expect their illness or disability to last long term. Considering my history with fibromyalgia, IBS, and now vestibular migraines and triple PD, I was advised to apply for this benefit as my condition is expected to last some time. It is clear to me that treatment can be a slow process, starting with getting the medication dose at the correct level, together with trying vestibular migraine therapy which is a step-by-step process to recovery.

Upon contacting the DWP by telephone it was only a matter of minutes and I had the necessary documentation in my email inbox for me to start filling in. I have no problems with the questions asked as it is clear that they need to know exactly how my condition affects my daily activities. Together with the application form, you receive a help file explaining how to answer each question. I had only read through the first two or three paragraphs before it was evident that this simple process was already triggering a minor migraine attack. At this point I could see that it wasn’t going to be a straightforward process. It’s finally took me about four or five attempts to read the whole document but was relieved to find out that they give you four weeks to complete the forms. This is most helpful but obviously people want to get the forms completed and submitted in order to start the application process.

It took me the best part of a week to complete filling in the forms as I was also waiting for a copy of the test results from the ENT consultant at my local hospital. I ended up ringing his secretary as after six days I had still received nothing. She was very helpful and said that they had a backlog of letters to complete but was more than willing to send a copy of it immediately via the post. It wasn’t until I was answering specific questions within the form had I realised exactly how badly my condition affects my daily life. After suffering so many symptoms for so long I had become accustomed to working round the problems and writing them all down on paper was quite an eye-opener. As the week went by I kept having to edit the questions to add more information as it’s quite impossible to remember how everything you do in your day is affected.

It was quite a relief when the day came and I received the report from the consultant. After managing to read it thoroughly I then realised that there were words and phrases within the report that I had never heard of before. It was evident that he had thoroughly examined my condition and considered how long each of my illnesses had affected my life. I turned to the Internet to research what was in the report which helped me greatly to understand exactly what was happening with my condition. It is quite reassuring to know, even though we probably don’t understand, that there are names for the illnesses that we are suffering from. It also gave me the opportunity to see how other people had tried to help themselves with similar problems. After having a final read through the application form I proceeded to submit it online together with the consultants report and the vestibular migraine therapy help sheet as this could possibly help them with my application. It was a straightforward process and I was offered a copy of the application for my records. As you can imagine it was a great relief to complete this process as it was extremely tiring and caused a lot of frustration to get everything right. It was only the very next day when reading the news online I found out that new PIP claims may well take up to 6 months to be seen!

Oh my days! As if things weren’t stressful enough!

I need a brew, until next time folks, take care and I’ll return very soon!

Namaste

Kev – M0LYF

First Steps To Recovery

It recently struck me that my symptoms seem to be telling me that I’ve had vestibular migraines and possibly PPPD for longer than originally thought. After much research into the condition, via Google and YouTube mainly, it has become quite a relief to realise that IBS and Fibromyalgia are just two of the symptoms! I’ve suffered from both of these conditions for years and after many visits to the GP and a number of different failed attempts at finding some form of relief from them, this may explain why.

I had no idea that migraines were NOT just bad headaches! I also had no idea that people have what is known as an ‘abdominal migraine’. Otherwise known as IBS? This would make complete sense to me as it doesn’t matter how careful I am with the foods that I eat, IBS can strike at any time for any reason, or so it seems.

So the first steps in my recovery is to research, research, research and learn about the condition that I’ve never heard of before. Being honest with one’s self about their ‘real’ symptoms is key to regaining one’s health in my opinion. There are symptoms with both conditions that simply don’t apply to me but after so much research I realise this is often the case with sufferers. Writing a list of symptoms is important as I can work on these issues as soon as I’m allocated a vestibular therapist. Presuming this is going to be the case of course! I really have no idea! I’m currently waiting for a copy of my positive test results from the ENT Consultant so I can forward it to the DWP to help with my claim for PIP, Personal Independence Payment. This is something I’d never even considered before but after speaking to a work colleague who’s wife has similar problems with daily living, it appears I am entitled to financial help due to my debilitating condition.

As much as this has all taken my life and up-skittled it somewhat, I can’t help but feel quite a bit of relief. It has made me sit back and really take a good look at my life and how, in all honesty, I wonder how I’ve coped for so long. Without going into too much personal detail, family life hasn’t been the greatest and my wife and I have had more than our fair share of troubles to have to deal with over the years. We honestly don’t know anyone that would have tried so hard to keep things together, but we have and it’s made us much stronger, that’s for sure.

So that’s all for today folks. I hope you all had a great weekend. I’ve not got a great deal planned for the next few days but hoping to get my PIP claim submitted soon as it will help out with the sudden loss of income we’ve had to accept. Stay safe, until next time…..

Namaste

Kev – M0LYF

How did I find out I had PPPD?

After having two trips to A&E department in as many weeks, I decided it was time to take the bull by its horns and contact my local GP to try and get an appointment to find out what was causing my problem. I managed to get an appointment with the nurse who carried out various tests to check for ear problems as she explained the dizzy spells seem to be a balance problem with the inner ear. She said she could see fluid in both ears although the left ear was much worse so decided to book me an appointment with the local ENT department at the hospital. She also gave me a repeat prescription for the prochlorperazine to tide me over until I saw the consultant. The appointment came round quickly within the first week and the consultant did a number of tests upon me to establish the diagnosis of vestibular migraines and triple PD. Rather than explain to you all what happened at that appointment, I published a YouTube video for my friends relatives and work colleagues that explains what happened:

Please be aware that I am no YouTube star and my videos are purely for documentation to help with my quick progress back to health. I am also hoping that by publishing these videos it will help others progress in improving their health and not being afraid to reach out for help. I for one, ignored my symptoms for far too long and I really hope that others don’t do this as it could be detrimental to getting a positive diagnosis which will help in the recovery process.

Thank you for taking the time to read my blog, I hope you also enjoyed my video. Please feel free to subscribe to either and don’t forget to pass comments on any of my posts or videos as I welcome all feedback and appreciate your time in sharing your journey with these problems. Without sounding too negative my next blog post will be describing all the things that have changed in my life. I feel it necessary to make a list of the problems I am experiencing in order to try and help with the vestibular migraine rehab therapy in the coming weeks. Until next time, take care and I will post again soon,

Namaste
Kev – M0LYF

Why ‘TriplePD Today’?

So why did I decide to write a blog based on PPPD, a chronic disorder that has completely changed my life over the past 4 months?

Well that’s a great question!

Back in December 2021 I started to experience strange feelings of feeling ‘semi drunk’. I say ‘semi drunk’ as i cannot really put my finger on exactly how i felt, but this was the only way to describe it. I recall going into work for my usual evening shift of frying fish and chips for the local towns folk and the boss asking how I was. I tried to explain that I felt ‘odd’ but carried on with my shift as usual as the tea-time rush was about to commence…. Over the next few months I started to notice that I was becoming clumsy, bumping into things, dropping things at random and generally becoming more and more dizzy over time.

I have suffered from migraines for quite some time and have tried a cocktail of medications over the years but with no lasting results. The side effects were as bad, if not worse, than the actual migraines.
In December 2021 the migraines started to increase, although I feel I was quite unaware at the time as to how bad they had become. My hearing had become a struggle and the aura that I was experiencing every time I had a migraine was making me feel very sick. I battled on, covering staff sick leave due to Covid and working plenty of over-time as people were taking holidays over the Christmas and New Year period. In all this time my boss had been fantastic, asking me if my health was OK, genuinely concerned to the point of lending me her husbands BP/Heart monitor. It was noted that my BP seemed about average but my heart rate was at a lower level of just 60bpm.

One sunday morning in early April, I woke up to what I can honestly describe as a ‘living nightmare’. I have never felt so dizzy and sick in all my life and ended up ringing the NHS Helpline for advice. I mentioned my heart rate to them and they advised me to attend the local A&E hospital for further investigation. I spent the next 4 hours trying not to fall over as my boss dropped me off for a check-up. I was prescribed 5mg of Prochlorperazine 3 times a day which helped to clear up the dizzyness and sickness symptoms. At this point I realised that my hearing and experiences of visual aura was increasing and becoming somewhat of a menace to me.
On the 30th March 2022 I arrived at work as usual but instantly started with an extremely bad migraine. After starting to get ‘blotches’ interfering with the vision in my left eye, it then progressed into a full blown aura attack and lack of sight in that eye. My head started to thump and my boss asked me how I was feeling. I just burst into tears as this seemed like the final straw. I supervise 3 other members of staff at work and I simply couldn’t continue with my job as my ‘condition’ was becoming over powering. Our delivery driver took me home as I couldn’t even walk without holding onto something, let alone return home on my e-scooter, my usual mode of transport.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

The above post explains a bit of history of how my condition got me to the stage I am now, on sick leave, and on a journey of recovery after finally getting a diagnosis of my condition. Please feel free to walk alongside me in this journey of self discovery, healing and helping others with similar symptoms to gain a better understanding of PPPD & Vestibular Migraines in the hope that we can all lead a healthier, happier life.

Catch you on the next post…….
Namaste
Kev – M0LYF

Create your website with WordPress.com
Get started