An Ordinary Girl With MS – Is coming to YOUTUBE!

Hello Everyone, how are you all today!? I hope you’ve all had a good week and if you live in the UK then I hope you have a lovely bank holiday.

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So… as the title would suggest An Ordinary Girl With MS is coming to YOUTUBE! (How exciting!!)

I have thought about creating a YouTube channel for a while relating to Multiple Sclerosis because there are a few videos out there but not many. I want people to be able to relate to my videos, find them enjoyable, realistic and also comforting.

Back in 2016/2017, I could have really done with an upbeat, supportive channel like the one I’m creating because back then I was in a rather low place. I just felt there weren’t a lot of relatable videos out there for me at that time with being reasonably newly diagnosed with MS.

So this year 2018 I have decided to create a channel for An Ordinary Girl With MS — this channel can be for everyone living with Multiple Sclerosis, people who are newly diagnosed, people who have family members living with MS or for people who would just like to know what it’s like.

It’s going to be an upbeat channel like I mentioned, however also realistic so if I’m having a ‘bad day’ or I’m not doing too great, then I may possibly film it (If I’m well enough)

I want this channel to be a place for us all to connect and most importantly a place where people don’t feel alone! I’m all about that and together we can fight this condition!

My new channel will launch on Saturday 1st September 2018 with an introduction and then my first video ‘My Diagnosis Story’ will go live on 2nd September 2018.

My channel is going to contain videos about: My Diagnosis, My Treatment, How I am today compared to when I was first diagnosed, What I eat in a day to help my MS, Evening & Morning Routine, The Positives of MS and The Negatives of MS.

I really hope you enjoy my new channel — please follow me on all of my social media platforms where I’ll be updating you each week of different videos.

Instagram:-an_ordinary_girl_with_ms

Twitter:- HannahEliza1

I hope you have a great week, and I hope you’re looking forward to my new YouTube channel!

All my Love Always,

Hannah xximg_20180818_0734243052587947129553429.jpg

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“With Every Limitation, There is an ADAPTION!”

Hello everyone, it’s me again! How are you all? I hope you’ve all had a good, reasonably relaxing week. As always leave me a comment below and we can connect 🙂

You’re probably wondering what this blog post is going to entail due to the title? Well, this is my second new motto (need to get it copyrighted lol) as you know the first motto that I’m still sticking with “Not My Problem” has been a great success and really made me have a different outlook with everything.

I’d say in the last few months I’ve been struggling a little (I’m generally fine — yes dad I know you’ll be reading this and worrying lol hehe) I’ve just been struggling with some MS symptoms and just getting a little down about them — let me explain.

A few months ago I felt like I was just going up and up with my health, I had more energy, I was walking further and fatigue was rather limited. In the last couple of months, things seem to have just taken a slight downhill with regards to symptoms. In general, fatigue has really been knocking me back, brain fog has been a constant pain in my ass and just generally not feeling great, combined that with my Copaxone injection sites playing up, I’ve just felt a little fed up recently. As you know I do everything to look after myself and listen to my body.

I think these feelings have just been building up as kind of like a mask over the past few months and it’s only now that they’re making an appearance. The other day at work I was talking to a couple of my colleagues (also amazingly support true friends) and when I mentioned that I was struggling, the tears emerged. It shocked me a little because I guess I’ve just been blocking things out a little and just trying to live with this illness, but when emotions come out… they come out!

My friends were so amazing (It’s nice to get a different approach to life from someone who’s not emotionally attached in a way) They reminded me of what I’ve actually been through this month:-

The summer cold — that knocked it out of me for a good while

My PIP Tribunal — That probably knocked it out of me the most and when I think about it, I’m probably still recovering from that as it was incredibly stressful.

The worry of George with his job — Not going to speak about this, but he’s fine now and in a much better place, however, it was still a worry at the time.

Still working 6 hours a week and learning new skills at work — I’ve mentioned before in a previous blog post that its not just ‘working 6 hours’ I have to leave the house at 7:40am and I don’t get home until 4:15 and work can be quite busy (I love my job and the people I work with & would never complain about them — we are like a family even though they know the industry is not my passion)

So with these four things that they mentioned they told me how well I’m coping! I mean soon I won’t have had a relapse for a year!! that’s fantastic!! I just need to cut myself some slack, listen to my body and I WILL get stronger in time! 🙂

So… the title of this blog post “With Every Limitation There Is An ADAPTION” — this is so true for example the day after the PIP tribunal I was supposed to go shopping with a friend (Retail Therapy) but I felt beyond exhausted, drained really, however, we went into town and hired a wheelchair from ‘Shop Mobility’. My limitation was my chronic fatigue and weakness in my left leg, but the adaption — the wheelchair enabled me to have fun, go shopping and buy some nice things!

This is what I mean by the motto. Another example, the other day I made a big portion of Stir Fry for myself to have over the next few days, I came home from work one day & felt exhausted, however, I didn’t need to cook anything because it was already done!

In life there are always adaptions that can be made in pretty much every situation, I’m learning this and it’s really helping me to live with MS, still have a life and fun but also it’s teaching me to listen to my body.

I now know with this new motto things are going to get better, I know that slowly but surely I’ll get stronger again and these symptoms will get easier to manage and deal with.

Today is a total relax day with my boys! I love these days and I’m now going to go and do a little light yoga to stretch out from the night’s sleep.

I hope you all have a great week, remember my motto — use it, share it and live by it!

Love to you always,

Hannah — An Ordinary Girl Living Life With Multiple Sclerosis — Bossing Life!! xxx

My PIP Tribunal, What happened & What it was really like.

Hey everyone, how are you? I haven’t been on here much over the last week because I’ve been a bit preoccupied. I’ve had my PIP Tribunal.

For those who don’t live in the UK or who don’t know what PIP is, it’s called Personal Independence Payment, it’s a benefit that helps Disabled maintain and live a relatively independent and slightly normal life. It helps people via weekly payments, mobility aids and extra benefits such as a disabled parking badge for their car and bus/railcards. It really can make someone’s life so much better and easier than what it is. It’s supposed to “give” them a life.

Unfortunately, though, our government are making things so hard for people with Disabilities receive the help they really need and unfortunately, people with MS suffer a lot with this. Over a third with MS get turned down or denied PIP and I was one of those people.

You start off by ringing the DWP (Department of Working Pensions) and ask to make a claim for PIP. They then send out an application form which you have to fill out and send off (This is the first incredibly stressful and difficult stage) once you’ve filled that out you send it back to the DWP along with any evidence you have about your illness such as doctors notes, letters from GP’s, Physios etc.

Now I had all this information and more including letters from my Opticians, managers at work and even letters from my Councillor. I sent all my paperwork off to the DWP and waited to hear back.

They got back in touch with me about 3 weeks later saying that I needed to attend a “Face to Face” interview. I was a little disheartened when I saw this letter come through, I’ve heard all about the Face to Face interviews and some of them are very misleading. The “Nurses” seem like they are being sympathetic, supportive and generally nice when in actual fact, they’re watching your every move the second they see you or if anyone else is with them, they’re watching you.

I’m not going to go into my assessment because this post is about the Tribunal, so obviously you know that I’ve had to fight to this extent.

For the tribunal I had so much support and guidance from the charity called DIAL and also from the MS Society, other peoples experiences and youtube so I knew kind of what to expect, however it still made me feel very anxious and stress — which consequently made my symptoms a lot worse cause me to have a mini set back, after I was actually doing well — thank you DWP thank you very much!

The Day of the Tribunal – 8th August 2018

The day of the tribunal… I was awake at 5:30 going through all my documents thinking about what questions I’d be asked. My nerves weren’t actually too bad but I think that’s because I was mentally drained and physically exhausted from the last 48 hours.

The great thing about it was that I had amazing support with me on the day, my dad and my aunt came with me (They live over 100 miles away — they’re awesome) and also my Disability support worker joined us to help me too. I felt so supported and this really helped me, it didn’t help my nerves lets face it I was still terrified but just having them there really meant a lot.

My MS symptoms on the day were horrendous, whenever I’m bad or I’m put under stress that I have no control over then my symptoms just go crazy. I lost control over my left leg (using one crutch to drag it behind me), my whole body was riddled with fatigue and I just felt awful!

When we got to the Majestrates court we noticed that there was a disabled entrance (Thank you!!) — however when we got there we were told that their lift wasn’t working and that they didn’t have wheelchairs!! My Dad and Aunt were furious, it was like they were already out to get me — not to mention they don’t have accessibility for disabled people apart from a very steep ramp that I had to drag myself up!! I got just under half way up and broke down — it hit me!! I stood there a cried to my Dad and Aunt, I was just so overwhelmingly exhausted and just felt that I couldn’t go on, however, their words gave me the strength to keep going.. keep up the fight!!

Got in there, got past security and sat in the waiting area with everyone else — there were no signs to tell me where I needed to go. All of a sudden we saw my disability support worker who told us that we were waiting in the wrong section!!

Before we went into the courtroom (A big office room) we saw the clerk who briefly went through everything and explained what I was going to expect. They mentioned that there was a judge, a doctor and someone who was either disabled themselves or who knew about disabilities who were going to be questioning me. There was also someone from the DWP representing them, however, they were not allowed to interrogate me.

We then went into the room, I cried a lot throughout the whole process, I couldn’t help it, it just all came out! The judge started explaining obviously why we were there and it was almost as if they didn’t agree with what the DWP had awarded me (nothing!) in the first place.

They then introduced the doctor, the Disability associate, moving onto who I had brought with me and then finally introducing the DWP representative.

In all honesty, the questions are all a blur now, I think I was just so exhausted I’ve kind of blocked out the experience. I remember that the doctor asked me how I got to court (very important as they’re trying to find out how well you are and especially if you have an unpredictable condition/disability like MS.

The doctor then wanted to take me back to when I was first diagnosed etc — this was over 4 years ago may I add! I can’t remember last week let alone specific details from 4 years ago! They kept referring to the documents that I had presented and I answered the questions honestly and in detail — this is also important, don’t go over the top because they will know, also don’t give one worded answers because that won’t help you either.

We then moved onto the Disability associate, they wanted to ask me questions about my walking and daily living — for example, how many metres I could walk…

This 20-metre rule that PIP/DWP have released is just so ridiculous!! I’m asking all ‘normal’ people how many metres do you walk a day?? Do you measure? no? I didn’t think so!! When I was being asked about how many metres certain walks were I just broke down, It’s hard enough living with MS sometimes but then thinking about and measuring how many metres I walk on a daily basis is just absolutely crazy and this needs to be scrapped!! I’m doing some work with the MS Society to scrap the 20-metre rule and I’ll insert a link here if you’d like to sign their petition! Scrap 20m Rule PIP

I was then asked about my ‘good days’– my answer to these questions was this “I never have a ‘good’ full day with MS… I have a good 5-6 hours if I’m lucky and then I crash with fatigue!” most people with chronic, invisible illnesses don’t have good full days, I mean waking up in the morning, bouncing out of bed and then on the go all day then going out in the evening, still going. That doesn’t happen with me anymore and do you know I’m fine with that, I’ve adapted and yet I have people from the DWP telling me that I’m not ‘sick’ or ‘disabled’ enough to receive any help at all to enable me to live a slightly more normal life!

After all the questioning — went on for just over an hour the judge said that I’d done really well and that they were happy to give me my result on the day (they can either give it to you on the day or post it out to you) I asked for it to be on the day. I’d gone through enough mental and physical stress, I just wanted it to be over — at this point, I didn’t care if they didn’t award me with any help.

I had to wait outside for a little bit while they deliberated and decided on their result, then I was called back through.

I WON!!!! I was awarded standard rate mobility with PIP, this entails 22.56 pounds per week that’s paid every 4 weeks, a blue badge — disability parking badge, which means that I’ll be able to park in the disabled places and also I’m entitled to a bus pass.

The DWP representative was actually nice, they said that they agreed with the results and that I deserved it — this made me happy and also annoyed. it wasn’t their fault personally but because of the DWP not believing me at the assessment it has resulted in a lot of unnecessary stress causing my symptoms to worsen — the DWP need to realise what they put genuine people through who don’t want all the benefits — believe me, I don’t benefit from something that I don’t need them for, all I wanted was a little bit of help to enable me to live a slightly normal life as a 28-year-old!!

I have to say that everyone on the day was amazing! The judge, Doctor and Disability associate were supportive, understanding and patient with me. My Aunt knew as soon as we went in that they were going to be on my side and that was very reassuring.

Also, what you need to remember — DON’T GIVE UP!!! KEEP FIGHTING!! The DWP needs to be fought and be told what is happening to innocent people out there!! Also, this is YOUR tribunal.. the Judge, Doctor and Disability associate only want to hear from you mainly, they want to know how YOU feel and how YOUR condition affects you. Everything the DWP wrote in their report they disregard and start a ‘fresh’ decision.

My final words… It wasn’t very pleasant in fact it was horrid and I have had to allow my body to recover for the last 3-4 days!! this could of all been avoided if the DWP had actually believed me and all my evidence in the first place!!

I’m sorry for the really long blog post this week… but this needs to be spoken about and the DWP and the British Government need to be aware of whats going on!

My next post will be a lot more positive lol.. I hope you’ve all had a great week, as always leave your comments in the comments section and I’ll reply to you 🙂

All my love always

Hannah xx