1 Year….NO Relapses!

Hey Everyone, okay so… I have 2 blog posts for you today!! (How Exciting?)

As the title would suggest today is 1 year and 1 day since my last relapse last year!! So obviously I just HAD to write a blog post about it, what I’ve done that has hopefully helped me and kept me relapse free.

As we know MS is an unpredictable condition and relapses can just simply happen without warning and without cause, but I’m going to be talking about changes I’ve made to my lifestyle over the last year, which have really helped me.

Changing my diet and becoming vegan

Now I am in no way super duper healthy 100% of the time (I’m only human) however for me since becoming vegan (Mainly for health reasons) I’ve noticed a massive change, which has been fantastic. The main one for me is dairy, since cutting out dairy I feel that really has made a massive change, as we all know and study after study show that dairy products can cause inflammation in the body and once I found this out I decided to cut it out — I don’t really miss much, vegan cheese is okay once you get used to it — I also make my own cheese sauce using Nutrtional Yeast. There have been times where I have had a little dairy but I really try to remain completely vegan and thats when I notice the most benefits.

Reducing my working hours

I reduced my working hours at work at the beginning of the year to 4 days a week and have been gradually increasing my hours and I now work 6 hours a day. I’m very fortunate and lucky that my employers are very supportive and caring, which I know some employers can be a little unsupportive, however since reducing my hours especially down to 4 days a week just having that extra day to rest and relax has made a massive difference and i have been able to be a more reliable member of the team and I love that because I love all of my work colleagues.

Reducing Stress

Now this one isn’t completely avoidable… stress happens to everyone every day, however I’ve been learning and practicing to not let it consume me. I found that when I was stressed out whether that be because of people, work or MS I found that it just consumed me and really affected me.. but now with my motto “Not My Problem” I just try and let it glide over and look out for me basically. When you have a chronic illness you just have to start looking after yourself and being a bit more selfish (I hate that word because I don’t see it as selfish!) I also try and stay off my phone more, or not get involved with what other people are doing — I hate the This Morning programme here in the UK at the moment because its just debate after debate of mostly petty things! (Just my opinion!) I don’t watch anything like that anymore because in this world I do me and look out for loved ones really. With all that, I do feel having a different approach to stress I do feel its helped with my symptoms slightly and yes I still do get angry but I don’t let it fester.

Generally trying to keep healthy

Yep thats right, I’m not and haven’t been exercising a lot or eating a completely clean diet — I’ve just been looking after myself and having lots of self care days.

So… Here’s to hopefully another year relapse free.. but if a relapse comes along…. We WILL deal with it!

A massive thank you goes to friends, family and all my online friends who keep getting me through this ☺️

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New YouTube Channel, Family Time and Nerve Pain! :)

Hi everyone, long time no speak! I know I haven’t uploaded a blog post in a couple of weeks, how are you all doing? As always leave me a comment below and we can all connect.

So… Last Sunday was the first day that my new YouTube Channel launched An Ordinary Girl With MS

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I’ve got 2 official videos uploaded now that you can watch, the first one is all about “My Diagnosis” — what happened, how I was diagnosed and how I felt. The second video is all about “What is MS” — I’ve seen many videos on YouTube explaining what MS (Multiple Sclerosis) is in a rather negative way “You’re going to become disabled”, “Everything will stop working” “It’s incurable” — I mean yes, these phrases might become reality to some, however everyone with MS is completely DIFFERENT!! That’s why in my video I really try a put across the reality of MS in a positive way.

I really hope you can spread the word about my channel and I hope that it brings comfort to some of you too living with MS, or even if you’re not it can bring you some understanding about the condition.

I’ve also had quite a stressful week too — in fact very stressful which in turn has caused my MS symptoms to really flare up, I booked today off work as a holiday so that I could completely rest my body (and write this blog post obvs lol) I don’t want to go into the stresses that I’ve had but yes, I’ve had quite enough for the time being thank you.

I’ve also had some great family times too.

Last Saturday I went up to my hometown to see my dad and Nana where we met the wedding photographer to get him booked for the wedding– seriously it’s getting so close now and I’m so excited! I just can’t wait to marry my best friend in the whole world! We had a wonderful day and I also managed to grab a cheeky first class ticket on the train there and back which was amazing!

It was my little sisters birthday last week and we had a great day visiting a beautiful stately home and a fantastic antique shop (I was in heaven!) We also went to see The Nun too (relatively new horror film — The Conjuring universe) I had a wonderful yet exhausting time another reason why I booked today off.

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And finally… nerve pain! I haven’t had it for a long time and I know that due to the pressures and stresses that I’ve had over the last week, its set things off. I’m actually filming a video about ways to manage nerve pain so I hope you like that too 🙂

I have a lot of hot water bottles, baths, lots of light yoga (stretching really helps), I try not to sit still for long periods because I find the pain gets worse unless I’m literally lying on the floor then that’s okay but I get dizzy after a while. I also fuel myself with lots of anti-inflammatory foods, loads of ginger, literally have so much ginger and cinnamon and dark leafy greens… I really do pump my body full of these foods when my MS is playing up and it really does help.

 

I really hope you’ve enjoyed this light, short blog post this week. Please check out my YouTube channel if you get the chance 🙂 I’m now going to go for a little walk to try and relieve this pain. Hopefully my next blog post I shall be pain-free!

Have a wonderful week.

lots of Love always

Hannah xx

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,

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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

My Week Away, Family Adventures & MS Fatigue

Hey Everyone, how are you all doing? For those living in the UK are you finding the weather a little easier to cope with? ( I certainly am!) Leave me a comment and let me know how your weekend has been.

Last week I went and stayed with my Aunt, Uncle and Grandmother for the week 🙂 I love spending time with them we always have lovely adventures and… nothing beats my Grandmother formerly known and Nana’s cooking!

So its been a lovely week, however my MS symptoms have been playing up quite a bit and I found myself resting quite a bit in the afternoons. My main symptom being… fatigue! I’m fine with dealing with fatigue my body tells me what it needs and its usually rest.

My Aunt and I would usually do something nice in the mornings and then in the afternoon whilst she taught the piano I would rest in my bedroom or sit in the lounge and have lovely chats with my nana — I love talking to her I always ask about things she used to do when she was my age, we are very close 🙂

So let me fill you in on my adventures that I got up to…

Monday

Monday morning my Aunt and I popped into the town centre to pay the final fee to the Registry Office where we are getting married next year! How exciting!! George and I have an appointment with Peterborough registry office this week to give notice of marriage and then… we are all good to go and can get the marriage package delivered! Its all happening now!

I had to rest in the afternoon as the fatigue hit, so I spent a few hours in my bedroom resting whilst my Aunt worked so it was a win win all around — fatigue was a little better after a rest — its been horrendous in this heat that we’ve had!

It was also my Uncles birthday today so we all made a little picnic, brought a cake and went down to my Aunt’s field where she keeps her horses and had a wonderful picnic ☺️ — I also taught my Nana how to Snapchat! That was hilarious!

Tuesday

Today was a little more restful because of what’s to come tomorrow!

We had a little trip out in the morning to a little garden shop where even in the heat we’ve been having, the flowers all looked beautiful ☺️ there was also a lovely little cafe attached so of course we had a cup of coffee and a little something to eat! Delicious!

I did however paint my Nana’s (grandmother formerly known as nana) nails! She loved them and k just spent time with her, which was really great! I love spending time with her ☺️

Wednesday

Today was a big day! We all had really early nights (I slept really well) and then today we were off to see some of my Aunt’s friends who kept and trained race horses!

As you all know I’ve been to Royal Ascot and a couple of other race days, so it was really exciting to see what goes on behind the scenes.

These horses were just magnificent! All in such amazing condition, real athletes! And they were all super friendly! Considering they had never met me before!

They were well looked after and had lots of things to keep them occupied, we even got to watch a couple go on the gallops, which was so exciting! I was able to sit down a lot because my Aunt took the car around and her friends knew about my MS and that my fatigue was playing up and they were wonderful to me.

After having a look around the yard we popped into the local town centre for something to eat and a look around, it was a beautiful little town and we stopped at this vegan/gluten free cafe and honestly I had THE best pea and mint soup I’ve ever tried! And the recipe was so simple!!

We then had a little look around some shops whilst on our way back to the car, which is when I found my bargain of the week!! In the British Heart Foundation charity shop I found a gorgeous dress.. my size for £4.99!!!!! Amazing!! I’m going to wear this to my friend’s birthday this coming Saturday!

Once we arrived home I had to go to bed for a while as i was exhausted, however WHAT an amazing day!

Thursday

Well after our exciting day yesterday, today was spent doing very little. We did pop into town because my Aunt needed to pop to the bank.. of course we had to go for coffee and we went to the cafe where the own will be catering for the wedding — we always go there as it’s so gorgeous!

Then we came home had a lovely home cooked meal by nana and the rest of the afternoon was spent resting and looking through my Aunt’s scrap book that I made for her 60th birthday ☺️

We also had our final picnic at the field because tomorrow I went home to be reunited with my boys 🙂🐈 — I also made the “Jus-Rol” chocolate croissants and introduced them to nana.. it was so funny! She absolutely loved them! Bless her!

Friday

Homeward bound! Today is the day I was reunited with my boys! Firstly we stopped off at a local retail store called “Boundary Mills/Downtown near Grantham for some retail therapy. I got some amazing sandals for £10 — bargain! Then I got home to my amazing boys and we generally relaxed the rest of the weekend ☺️

I hope you enjoyed reading this week’s blog post ☺️ sorry it’s been a bit late — technical difficulties!

Sending you lots of love always,

Hannah xx

A Little Family Boat Ride & Coping With The Heat W/ MS

Hey everyone, how are you doing?! I hope you all had a good week last week?

Some of you may know that here in the UK we are having some beautiful and rather hot weather this summer (to be honest we’ve actually had a couple of good summers in actual summer season)

If you’re not from the UK, you’ll find that English people moan about the weather… A lot!! Whether its hot, cold, raining, windy.. us English people always have something to say about it!

As much as I’ve been loving that beautiful mornings and sunny days, the heat has definitely been making my symptoms flare up — especially fatigue! Fatigue has been the worst for me, sometimes having to resort to an aid like a walking stick or sometimes needing to find somewhere to sit down & rest.

Yesterday we had a lovely family day out, for my dad’s Father’s Day present we arranged to take him out on a lovely boat for the afternoon ☺️ My Aunt and Uncle helped my sister and I organise it as they know someone who has access to some gorgeous boats and they are my dad’s favourite things ☺️

I made a little picnic (some vegan bits and some non vegan bits, but I didn’t eat those) and off we set!

It was such a beautiful day and thankfully majority of the time it wasn’t too hot, with the wind from the water blowing it was nice and refreshing. There were a couple of times when I sat below deck for a little rest but it was a really lovely day!

When we got home the heat was starting to affect me, so I sat in my grandmother’s cool living room with a glass of cool water and had a lovely cool bath… Also I LIVE with the fan at the moment so luckily I was able to sleep very well ☺️

This week I am spending time with my Aunt and Grandmother so next week’s post is going to be all about the adventures I have got up to (nothing too wild lol.. all about balance) ☺️

I hope you all enjoyed reading this blog post and let me know any tips on how you deal with the heat to manage your symptoms or if the heat makes your symptoms better? I love hearing from you!

Lots of Love Always

Hannah xx

Weekly Update:- Life with MS

Hey Everyone! How have you all been this week? Let me know in the comments how you’ve all been ☺️

So.. I’ve been fighting off a summer cold this week, in fact I had to take a few days off work because as us spoonies all know, it’s not just the virus we’re fight but also our other issues too!

My MS symptoms have been heightened anyway in the heat, but having a cold too just made them worse.. especially fatigue!!

But with plenty of rest, lot sofa fluids and good food, I’m finally out of the tunnel and went back to work yesterday and did 6 hours, which I’m really proud of! I was exhausted when I got home and in fact fell asleep at 9pm! (Yeah I was a little annoyed about that because it was a Saturday night — but when you have any other chronic illness you learn to become a lot more relaxed and chilled about life)

Copaxone is still going well, apart from the odd rash I get after injecting.. but I’ve come to realise that if I inject and I haven’t had enough fluids, then the rash is a lot worse.. so I now make sure I drink about 3 glasses of water before I inject and that seems to be work #copaxonetip lol!

Ive also been discovering some new vegan food from my local Sainsbury’s that’s delicious! Vivera have come into the shelves in some Sainsbury’s and Waitrose stores… Some of the things are quite pricy.. but worth it! I had 100% Vegan BBQ Pulled Veggie and it was delicious (made from soy) and I’m looking forward to trying more from them!

Other than that this week has been a little bit boring because I’ve been poorly.. but now that I’m back to almost full recovery (and my MS symptoms are slowly calming down) I’ll be able to get back to my adventures ☺️

I hope you all have a great week! And I’ll see you next Sunday! ☺️

Lots of love Always

Hannah xx