Time to speak up..

I feel I only end up writing a blog when something has an impact or departmental affect on my life, but now I feel like it’s time we speak about some real issues – some of which I have raised in the past too.

Mental health is at an all time rise. It seems we hear more and more as days go by, someone has taken their own life, and that is honestly heartbreaking. I mean the media are always portraying certain issues that are really unimportant to our every day lives, to be Frank, majority of the time, the things the press publish is none of the publics business. How about the press publish real stories, I read an article earlier today regarding a suspected 69 suicides which coincide with the DWP disallowing or cancelling individual’s benefits claims.

I mean, it’s been a bloody struggle for me to get the correct benefits I require, I am fully entitled to PIP, as are so many that get denied continuously, it is such a stressful process to do through with the application requesting such in depth detail of what you can and cannot do. I understand fully this is there for a reason, you need to manage the applications somehow, and of course some people are not deserved to be awarded these benefits,as we all know.

My nan is 65 years old, has fibromyalgia, in the process of waiting for a date for a second hip replacement, and just overall isnt a very well lady, she has been refused for PIP twice, this is wrong. Some people are awarded PIP for no reason whatsoever by slipping through the system and just getting away with it, yet the people who genuinely have a reason, get declined over and over again. This needs to stop, and we as a community need to make it happen.

Suicide is obviously horrendous no matter the circumstance, it never needs to be this way. So we all need to work together to be a little kinder, and a little more understanding and patient. I believe that with the latest of a celebrity passing away through suicide being so heavily publicised is so wrong, it’s so sad, we all know it happened, but now the public portray of recent happenings need to stop being pushed over and over again on the news to let her family grieve in peace.

My point is, is why is this portrayed in the news so heavily, when the 69 people suspected of taking their own life because of a government funded decision to say whether they require a benefit or not, isnt shown? They do not want to take ownership for the depremintel affects they cause to peoples lives, old and young, Male or female. They wont show this on mainstream news usually because it’s the sort of news that is going to cause a stir, the truth is it doesnt need to be publicised anyways, we all know how the DWP work and it isnt fairly decided.

After that long rant I have decided to start a petition which the link is below. Please if we get enough signs maybe we could make a change and stop this from happening, if people have the right medical reports and are diagnosed with a life changing illness or condition, they are just given the Benefit they are entitled to and do not have to scrimp and scrape with money and can live ‘Personally Independently’, without gaining severe depression and anxiety on the way worrying about finance aswell as health.

http://chng.it/db7JDqTNDT

Be kind, always – offer a helping hand where possible, ring your friends and family, reach out to someone you aren’t close to you see some red flags on social media, let’s make the world a happy place rather than the dark place it is today.

P.S, if anyone ever needs a shoulder, my inbox is always open and always will be to help where I can, feel free to slide in to my Dm’s.

Me, MS and work..

This blog is a tad overdue as I have been extra busy and let it slide a little. In recent months I have been relocated for work and got a new job working closer to home within the same business, which is great and I am so thankful for this opportunity. Unfortunately I have had more time off since starting than I have actually been in, due to me feeling genuinely unwell. I am sure that I was hit with some sort of curse at birth or did something extremely bad in a previous life!

I find it really hard to allow myself to rest and just accept that I cannot help if I am not feeling well, because when I don’t feel well, it isn’t usually just a cold or a headache, but it is that and ten other things all at once, and my body seems to completely shut down the second I do so much as sneeze. I said to my mum on the phone earlier, all I have to do is sneeze and a brain cell explodes and becomes a new lesion on my brain.. obviously I am joking, it might not be a new lesion, but the ones that were there already are enough to cause me multiple problems throughout the day.

In the past couple of months it seems that I cannot catch a break, I took myself off to A&E because I was really worried about my breathing and it turns out I had pleurisy and to others, they might be able to get up and go to work still and be able to manage it.. I then went on holiday once I had recovered from this, but even on holiday I couldn’t escape the problems that occur, with my legs constantly aching and feeling so heavy and stiff that it is as thought they have weights around my ankles stopping me from walking.. I then came home from holiday and had a trip to Scotland for work, which I was feeling very anxious about as I have never been on a plane alone, not with MS anyways.. But it turned out to be a great trip and I learnt a lot, and enjoyed my time. Once I was home from Scotland I seemed to have caught some sort of virus leaving me with a chest and ear infection.. which in turn caused me to end up with completely numb right leg.. there I am thinking, oh.. great, all I wanted to do was get up and go to work but yet again I am stuck being unable to.

Some might see this as moaning, I’m not.. simply explaining how difficult life can be with something like MS. Yet I hide all of this so real, although inside my body is throwing a complete tantrum, telling me to stop and just sit and rest. But the truth is, im sick of resting, im tired of stopping my life for this condition, and to be honest, just lately I think is when it has finally hit me, I have to deal with this rubbish for the rest of my life, and that is pretty overwhelming and intense to think about. Every day I have a reminder of MS, and in reality I never want to think about it again.

i thought that after I had my first round of Lemtrada, that would be it.. id be fixed, luckily I still have another round so, fingers crossed that can make my MS more manageable. My point to this blog is, to anyone feeling down and like they are all alone in feeling this way and having to deal with these things, is that you really aren’t, I think we all need to give ourselves a break, and admit that sometimes life happens and we simply cannot worry about everything around us, which in effect could make us so much worse.. as we all know, stress really does seem to make us so much worse.

i know that I need to stop worrying so much, work is important but so is my health, and I really need to put that first, if I cant make it into work then, so be it. I will just have to take it one day at a time and wait until my body is recovered. I just hope that no one else blames themselves for this, and understand that it is out of our control, which is, I know very frustrating, and It can be very difficult to explain things to people.. but if someone is willing to judge you for something you do not decide, then they need to go!

The climb…

Today’s blog is a little bit emotional for me to write as it’s a huge part of my life and a really big deal to me. I find myself in a constant battle between my state of mentality and my physical ability. Honestly, it is a massive struggle to try and battle those two things, because In your head you’re thriving and motivated to do things but then you have these imaginary weights around your legs tying you down and stopping you from doing them. This can then become a problem with your mental health, draining you of energy and making you depressed. As much as I am not depressed, I am angry, so very angry and frustrated, exhausted with battling myself every day. I, as a young woman, am very determined, motivated and stubborn. This is a good mixture of things, until you’re in a position where you cannot complete the goals you have in mind.

I went back to work last week as part of a phased return, and I guess this is what my blog is all about. 2 hours travel on buses, trains and walking is enough for anyone with a fully healthy functioning body, but for me its excruciatingly exhausting. I have this problem with my right leg which makes it extremely difficult for me to do this type of travelling on a daily basis, from spasms, joint pain to constant pins and needles and numbness. It’s all fun and games when these symptoms happen whilst walking! When you’re 23 and you feel like you’re going on around 83, it isn’t a pleasurable experience at all. It is really damaging to me to think that this condition won’t allow me to succeed in what I want to do.

Saying all of that, I remain very positive about my future, constantly attempting to move on and regain the strength to start again is a very brave thing to do, so anyone that is going through anything similar right now, well done, you deserve all the praise in the world, and I hope everyone around you recognises how difficult and tedious this can become to do, over and over again. I think having a great support network of family and friends, who understand is tremendously important to help you along your way in life when things get rough. I just want to tell everyone feeling like life is hard right now and that they’re not doing enough, that they are. Things take time to rebuild and fall into place, but you will make it and get to where you want to be eventually.

As Miley/Hannah would say ‘Life’s a climb, but the view is great’.

I’m still me..

Below is a blog I recently wrote for the Metro. As it is World MS day today and I have shared so much of my life with this debilitating condition, and how it affects me.. the links with all social platforms and tabloids I have worked with are below also..

As time goes by you would think people should surely become more intrigued to learn more about a life long condition someone they are close to is going to suffer with for the rest of their existance. Unfortunately that is not always the case, the lack of understanding of invisible illnesses comes from the most unbelievable places, from friends to receptionist in doctors surgeries.

I started my blog in hope to raise awareness of my particular condition, but if it makes pepple see any invisible illnes in a better light then that would be amazing. I think a lot of people are very narrow minded and ignorant when it comes to someone having issues that are not visable on the outside. Sometimes you have to dig a little bit deeper than the surface when it comes to certain things in life, if you have mental health in any aspect, you cannot see anxieties, depression, panic attacks, the same goes for me dealing with multiple sclerosis.

I think dealing with antthing like this is very difficult for anyone, but i do feel that as i am so young its difficult in a very different way. People do not expect a young girl llke me, at the age of 21 to be diagnosed with such a condition, my whole life ahead of me and all of a sudden it became a struggle, my life was at a stand still, and in some ways, it still is. There are a lot of things that i am still unable to do, such as go to work like i have done since the second my national insuranve number came in the post when i was 16, and i got on the internnet applying for all sorts of jobs and finally got one in debenhams. Since then i have had many jobs including working with severely disabled and special needs adults, which i do believe is why i probably have such a better understanding of invisible illnesses.

I have been aiming to express more of what it is like to have an invisible illness since i was diagnosed and I do think that it is still not going very far in helping others to understand. Since diagnosis i have had so many symptoms which are not visible, i have lost the use of my left arm, lost eyesight in my right eye, bladder control is different to how it should be for an almost 23 year old woman, and excruciating pins and needles and numbness making me very uncoordinated and unable to walk or move at times. My point to this is, i am very healthy looking the majority of the time, i still attempt to make an effort with my appearane, ive always been a girly girl who loves to do her hair and make up, some days it just is not possible, but i will never stop trying, I went out recently to meet a good friends new girlfriend and whilst getting ready with no glasses yet (As i have been prescribe to where them all time due to my previous optic neuritis and am awaiting them to be ready to collect), with bad spasms in my fingers, i still managed to put on a pair of false eyelashes and ensure my nails were painted, which let me tell you, was not an easy task in the slightest, but i pride myself on my strength and will power to do what i want to do!

I think although i have MS, i am and always will be, still me. But i do believe this diagnosis has really been the making of me and has shaped me into a far better person than i was before. I really do want my blogs to help others suffering and dealing with everything i am and have and will be dealing with for the rest of my life. I want people to approach me if they need to talk things through, because i know how lonely this journey can feel, because even though i do have such a good circle of people in my life, who do understand and constanntly lift me up, unfortuntely there is stll a minority who dont, and it does feel like you are all alone at times because, the truth is, no one really gets what youre going through, unless they have too.

Basically, i am still Aimee, I may be Aimee who has MS, but MS will never have me, and thats the motto i live by.

I am Me, I am not MS.

https://www.romfordrecorder.co.uk/news/rainham-blogger-with-ms-shares-her-story-1-6076455

https://metro.co.uk/2019/05/30/living-with-ms-yes-i-can-take-a-selfie-but-that-doesnt-mean-i-can-walk-9732149/

https://www.mssociety.org.uk/what-we-do/news/calling-out-ms-prejudice-in-ms-week

https://www.bastillepost.com/global/article/2752637-woman-who-met-her-boyfriend-weeks-after-a-bombshell-diagnosis-reveals-how-it-helped-seal-their-love/

https://www.google.co.uk/amp/s/www.comicsands.com/woman-who-met-her-boyfriend-right-after-devastating-diagnosis-explains-how-it-actually-helped-seal-their-love-2635458796.amp.html

https://www.time1075.net/rainham-womans-honest-blog-about-ms-aims-to-raise-awareness/

https://www.mssociety.org.uk/what-we-do/news/just-because-i-look-healthy—doesnt-mean-i-am?utm_source=Twitter&utm_medium=organic_post&utm_content=world_ms_day_2019_tw&utm_campaign=2019M7202_0992#

The L word..

So this week I finally started my treatment of Lemtrada. I really never knew what to expect ahead of me all these months of waiting and anticipating what is to come. But, let me tell you, it’s my fourth day so far, one day to go! And I can honestly say, in reality this is a breeze.. I was expecting so much worse, all sorts of things running through my mind constantly. But I’m attached to this IV drip machine, with a Canula in my arm and the treatment running through my blood stream. I am honestly finding the whole experience as though it is the biggest weight off my shoulder. Just being here has relaxed my mind and anxieties so much, so relieved it is being done, and hopefully gives me my life back.

I am so positive that this is going to be the making of me since my diagnosis, dealing with all of this, support or not, you do feel alone. Like there is no one who understands, and in reality, no one really does, unless they have been through this theirselves. It is easy to try and understand but you will never know how another person will deal with something personally.

I think the worst thing about this is the sheer boredom, but in all honesty, to be bored for a week and restless, well it is a hell of a lot better than being bored, restless and my MS progressing further in the future isn’t it! The steroids help, but.. the insomnia is awful. As an outpatient I have just a simple chair to sit on, and it is not the most comfortable to say the least. A nice sofa to lay on and attempt to sleep would be fab! The steroids stop me from being able to taste normally and that’s a pain too, but it’s for a short period of time to potentially give me my full life back and I am smashing this chemo and doing my absolute best to stay in the best frame of mind and mental attitude I can! I mean, life is hard enough as it is sometimes, not only do I have the MS to worry about, there are personal issues in my private life too which cause major stress and anxieties but that’s another story for another time – we all have these problems we deal with behind closed doors.

The support I have received is honestly amazing from my family, partner, friends, and medical team.. couldn’t ask for better. I think any negativity needs to try and be squashed and ignored before it arises into a real problem, which is something I am currently trying to battle. Do not let a potential problem become one before it has happened. It is as simple as that.

I’m writing this blog entry as I just want to put others going through the same as me’s mind at rest and let them know, you can do this! It isn’t that bad, it’s a great opportunity to help yourself feel that little bit better – it isn’t going to cure us, but it is going to hold off the progression for a lot longer than it you never had it. I am also writing it for people with questions regarding this, or with lack of understanding. It is good to speak out about these things, and it is a hell of a lot easier to write it and share like this than type this out to everyone!!

Anyone else in the position I am in, or on the same road.. you can do this! It is scary and new but it is also exciting! I cannot wait to go back to work and get my life back on track! So here’s to the future, and fingers crossed my side effects from the treatment stay at a minimum. If I can do this, you can do anything you put your mind to.

One day left this year and then round 2 in a years time! Let’s pray for the best and hope this is going to be an amazing outcome!

Something I never thought I’d experience.. the desire to go to work!

People pray for the time that they can retire, the time they can give up work and just do nothing. People wish every day that they didn’t have to drag theirselves out of bed to go to work. I used to be one of them people. I used to wake up and have to force myself to get ready and go to work contemplating how in 40 odd years time I won’t have to do it anymore. I used to take life for granted and I never appreciated something some people cannot actually do, something as simple as going to work.

Now I am one of them people, I cannot go to work, having been signed off sick from work again since around October time last year, in the hope that not putting pressure on myself and ‘relaxing’ may make my immune system slightly better.. from the outside people may think, ‘Oh Aimee doesn’t have to go to work, I’m so jealous of her, I wish I didn’t go to work’ but little do they know the thoughts that run through my mind are enough to haunt anyone and almost close to pushing people over the edge. I am quite lucky in the respect that I can manage my mental health and anxiety in a way where I do not let it darken my life and ruin my train of thought.

Of course people are fully entitled to have a little moan about work, we’re all guilty of it, I am guilty of moaning about work at times.. we’re only human, and I am anything but a hypocrite. Although I do ask of people to reconsider moaning as much and wishing their life away, the prospect of getting up every day with something to do is something I envy people for. My partner gets up every day for work and I wish it was me, just with the hope of something to preoccupy my mind, something to give me a meaning. I try and try and try to find something to do, painting.. let’s start a new series, but I struggle so hard to concentrate and just manage to keep my mind on one thing for longer than 30 minutes.

The truth is, I never dreamt I would be in this position, never. You do not at the age of 21 sit and think I cannot take this for granted, I need to ensure I’m comfortable and secure with money, I must go to work and enjoy that I am able to do so. You do not think of these things at any age. But my point is, is that, life is too short. You never know what’s around the corner for you or a family member. Every day is a new day. One day I will be going back to work and I cannot wait for the day where I have something to do, my independence back! This condition is overlooked and misunderstood so greatly and I feel that by me sharing my deepest thoughts may just shine on a little bit of awareness for some that do misunderstand it. This is a long winded, rant of a post, but this is how I feel. Bored. That is all, just bored. Tired of sleeping. But I will get on with it and look forward to the weekend when the loneliness disappears and I am able to spend time with people and socialise normally, when no one is at work anymore, I live for them two days a week!

It’s not what it once was..

So lately I’ve had a lot of personal struggles with life in general. As someone who was not emotional in the slightest pre diagnosis, all I can think about lately is how bloody emotional I actually am now. I cry every day, every bloody day. All it takes is a slight twinge or for me to miss my dog to make me cry at the moment. I mean I have a lot of stress in my life which is nothing to do with MS but, let me tell you, having this stress with MS completely intensifies every ounce of emotion within me. For what might have made me sad beforehand, well it lasts for days, weeks even. I can go hours without being upset and forget all about my worries, and then all of a sudden it hits me and I cannot contain my emotions any longer and i just explode into tears and tears. The only thing that seems to help me is to sleep. But even sleeping has become a struggle as of late. I have been having reoccurring nightmares every time I sleep, resulting in me sleep talking (shouting), hitting my boyfriend in my sleep and all sorts. I sit here wondering, is this because of my MS? The stress of life? Or could it possibly be my medication? Honestly.. who the hell knows? Because I certainly don’t. It is w constant struggle to try and remain positive but somehow, I mange it the majority of the time.

This blog I’ve started is all about my journey with MS and raising awareness, but I would also like to highlight the impact this has on my mental health. To be quite honest, I have always suffered with anxiety and panic attacks, but that does have another reason behind. The thing is, I think you have to somehow learn to remove the things that affect you in these ways. Whether it is family, friends, a job or just anything that causes a drain on your life. I have learnt that although it may be hard to separate yourself from these things at the time, it is the best thing to do for your own mental health, and I am fully aware of how hard it is to do this, it is easier said than done, I know this. If you look within yourself to detach from any negativity and drains on your best interests, that is the first step.

I have noticed in myself I have been feeling a bit whole lot better after doing these things. Mentally and physically, better. I mean I’m not 100%, I don’t think I ever will be, but just slightly better is better than nothing in my opinion. It is better than staying in the same mind space I was in previous to fixing what is wrong. I do believe that with every bad situation a little bit of good comes through. And that little tiny bit of good will forever outshine the bad. I’ve found a happy place, a safe haven. For me, that place is a person, but for you it may be a place or a book, maybe a walk through a forest. You can find your safe haven in all kinds of places for yourself. My safe haven, I am so grateful for, I cannot begin to explain exactly what this person means to me.. and without them, I honestly have no idea where I would be right now.

These feelings affect everybody on a daily basis, and I know that currently in our society he stigma of mental health is wildly played on and advertised by people that may not suffer or understand, but perhaps with people speaking out a little bit more honestly, it may be able to help people have that bit of understanding that they require. My safe haven comes in many forms of people, and I appreciate each of them individually. My point to this blog, is speak out, be honest, be brave. Sometimes just writing down how you feel works wonders, and there is no harm in going down the road that the doctors and speaking to a professional about how you feel. If we all help each other, the world could be a better place.

So if anyone finds this post upsetting or depressing, don’t. Don’t be afraid of my words or how I’ve felt, be in awe of the positivity I have in fixing myself and the situations I aim to close all negativity from. It’s a mountain to climb, but I’m hoping at the top, it’s a hell of a view!

Stay happy,

Aimee x