Friends.. This is for you xx

So I recently read a post about a girl asking how to deal with her best friends chronic illness, and it's never actually dawned on me that other people may have been struggling with my diagnoses too. Obviously your friends will never go through the same amount of hurt, pain and struggles with my MS but they will still see and feel it. 

I have been so self absorbed with being diagnosed that quite frankly, I never even thought of others (whether this is right or wrong I don't really know). Im not gonna lie the past few years have been so difficult with trying to find a happy medium within myself that I have totally just been so self centred. so yeah, this is just a quick sorry and thanks sesh.

I'm sorry to any of my friends if I ever disregarded your feelings towards me cos it wasn't happening to you. It's been a difficult road for me and please know I am entirely grateful for the constant love and support. It's all still really new to me and I'm still getting my head around having this shit disease. I'm sorry if I'm a moody bitch with it all too. I hope I haven't changed a huge deal since when I was first diagnosed cos I've been cool since day, but if I have I'm sorry! It's not purposely done, I'm still funny af so alls good haha,

To any new friends (you know who you are), sorry I didn't really tell you about having MS, I just don't  want it to define me. Thanks for loving me for just simply being me! Sorry that I have to cancel plans last minute. I can't imagine my life without you guys so thanks for just being so cool. Thanks for making me feel so unbelievably comfortable around you all. Thanks for the adventures, I never want it to ever end.

I also thank you all for checking in every now and again, sometimes it doesn't matter how many people you have around you having MS can just eat you up at times, it's such a powerful disease physically and mentally and you don't realise how much I'm grateful for just a message asking if I'm okay ❤️

Atm for me my MS is 'when it's good it's very good and when it's bad it's awful' but honestly having my friends around makes it so much more bearable. 

Shout out to you all.

Love you longtime. 

Mermaid Rosie xo

2015/2016 relapse.

I haven't really blogged in a while because I've had nothing interesting to report lol, until a few months ago.

So I've been off work since mid November due to the worst relapse I've had to date. The right side of my body had a complete meltdown (what a drama queen my body is ha). But seriously, I can't begin to explain how difficult it has been. It felt like a complete loss of independence. I think the most difficult thing at times is that people don't believe or understand how hard it is. People assume because I look fine on the outside or because I'm fairly young that I'm ok.. 

So I've been given some tablets by both my neurologist and GP which should hopefully help my symptoms calm down. I feel like a walking pharmacist at the moment, I'm genuinely contemplating buying one of those day of the week tablet cases too lol.

I'm also actually really confused. When I relapse I have extreme aching pain down the right side of my body but my neurologist says that's nothing to do with MS (I think he believes I'm a drama queen, I'm not just in a lot of pain) however my GP disagrees and says she knows many patients who have aching with their MS. There's a saying associated with MS 'no two the same' so how could my neurologist just dismiss my pain? Maybe I'm not the same as the other patients he's had.

I still don't feel great but I go back to work tomorrow which feels more daunting than my first day 4 and a half years ago did, I've never felt so nervous about work. I'm sure I'll be fine.

So anyways enough of feeling sorry for myself, here's my list for any future relapses I may have:

How do you actually 'deal' with a relapse? Here's my opinion on what helps.

1) Don't cut yourself off from family and friends. I'm very lucky to have an amazing family who stick by me and understand as well as they can. I also have a few good supportive friends who still love me, even when I'm being miserable haha.

2) Try and get out. Don't mope around at home if you're feeling a little better go out! When I first relapsed I was really ill and couldn't get out of bed most days which mentally is not good. As the weeks went by, when I was having a good day I'd try and make the most of it and pop out (tbh getting out of bed was sometimes an accomplishment so actually leaving the house was like me doing a marathon lol).

3) Communicate. Whether it's with family, friends, doctors, work. Communication is so important.

4) Keep busy. I bought some arts around crafts bits to do but honestly I didn't feel up to it both mentally and physically. However I will make a conscious effort next time to do something other than watch Netflix all day (I must have been their best customer though haha).

5) Buy another kitten. Haha not really, otherwise I'll end up with hundreds of cats (not that I'd care!). But We did get a kitten a couple of weeks after I relapsed. We named him Dexter and although he is crazy he really helped me. Sounds ridiculous but he did. I felt responsible for someone and that was nice!

                                                      

                                                              Me and my baby Dexter ❤️

To any of my family and friends who have read this, I love you. And to everyone else I love you too haha thanks for reading xxxxxxxx

2 years..

Tomorrow (June 19th) marks 2 years since I was diagnosed with MS. How do I feel about this? I don't know. It's difficult. Part of me looks at how far I've come and what I've achieved despite having an auto immune disease but the other part of me looks at a future I may never have. Perhaps I'm holding myself back. I probably am and I should really snap out of this. Whenever I do snap out of this kind of mood I'm kindly remind by my nervous system that actually I'm not a normal healthy person and I do need to slow down. Finding a happy medium would help me accept being ill, if I don't accept this I think that this illness will just eat me up and spit me out.

coming to terms?

How do you ever learn to come to terms with having something you don't want?

So I haven't posted in nearly a year, and I've been trying to think why I haven't and it just clicked.. I write this whilst sitting in pain remembering at times like this I have a progressive neurological autoimmune disease (MS).

It's taken me almost a year to realise that I'm never going to be healthy again, and that's made me sad. Everyone thinks I'm this strong person, or perhaps they expect it? I dunno, what I do know is that I'm not nearly as strong as people think I am. It's just a facade I can play very well I think.

I know there are people out there worse off than me, I get it I really do, but I just don't wanna live with an illness that will eat me up and just spit me out. I'm scared. People tell me not to think about the future but surely you have to? I know everyone's future is pretty much unknown but I feel like mine is really scary. 

My charity work for the MS society has been non existent right now which also makes me feel pretty crap about myself but I've got a few ideas flowing (thank god)! 

I suppose what I'm trying to say is that I'm living with something I'm trying to ignore and it's not going away however hard I try and that's not healthy for anyone. How do you accept that one day the normal you know is going to disappear? I don't wanna rely on medicines to live I really don't. I feel like the last year I have changed, maybe not on the outside and the way I act around family and friends. But inside I've come to realise that not everything lasts forever and it's just frightening I suppose. I don't wanna be cynical but just realistic?

But seriously how do you come to terms with having something you don't want? Maybe it's time...

Being grateful :)

Lately I've been feeling grateful about so many things so I thought I'd share my thoughts and feelings.. There is so much that many of us are grateful for apart from the essentials like food, drink,shelter etc.. At the moment I'm feeling so very grateful for:

1) my parents- I am soooooo grateful for my parents. They have stuck by my side through everything and I wouldn't be the person I am today if it wasn't for them. Since I fell ill in march 2011 they've both been by my side and come to every doctors appointment with me. I can imagine how hard things could have been for them but not once was that reflected on the outside. They were forever positive and telling me that nothing is the end of the world. I seriously couldn't have better parents. I love you both to the moon and back! And they're also taking me to Australia for my 21st!!! Best parents ever? Yeap I think so too

2) my family - since day one they have been supportive and not afraid to talk to me about my illness, which I love. They are such a crazy lot but I wouldn't have it any other way! Everyone is soo supportive in whatever I do. Whenever I come up with my crazy fundraising ideas they never tell I won't be able to do anything,they're so positive! Which I love and which makes me love them so much ❤️

3) my MS - sounds so weird but I'm so grateful, not only do I now have a name to my illness but I've also met some amazing people who are connected to MS in one way or another. Since being diagnosed I've become such a mature and level headed person. Yeah, I hate MS so very much but since there's no cure it's something I can't run away from, instead I'll just embrace it and do EVERYTHING in my power to help fundraise which will ultimately help find a cure :)

4) My friends - although if I'm honest I've lost many friends since being diagnosed or people are very different towards me (their loss not mine!) I do have such a lovely bunch of friends who are very supportive in whatever I do which is so lovely it's nice to know people care about you (as silly as that sounds), I've also made many new friends which it's great :) I have a group of 8 girls, including me.. (you know who you are) which most of them I've known for almost 10 years, I literally wouldn't be able to cope sometimes if it wasn't for them. They're so positive and funny and supportive and if you're reading this I know I don't open up much but thank you, I love you all so much ❤️

5) my cats - I love my cats haha (WARNING: future cat lady) need I say more? Haha

6) Work - since sept 2011 I've been working with the best people I could have imagined! I'm so grateful to have had a part time job during uni so I wasn't a poor student (yay)! The support I've had from work has also been amazing, I couldn't have asked for anything more! I've met some of the best and funniest people at work, which I know I'll be friends with forever ❤️

Life's gooooood!

I know I haven't posted in a while things have been pretty hectic atm! Got a few things which makes life good atm: 

1) Good news from the neurologist.. Atm My MS dormant so alls good, I'm carrying on my eating plan too :) 

2) I ve also had a little radio debut talking about my MS story on BBC three counties radio too! That was amazing and just so much fun I wish I could do it all again! 

3) Uni is almost over!!! (Yay) can't wait! quite nervous about entering the "real world" but I'm sure I'll be fine :) haha

4) I'm running the half marathon (haha yes, really) for the MS society uk and I'm hoping to raise £1000, it's definitely going to be a challenge but I love a challenge. It's a looooong run but when you're so passionate about something things will always be fine! 

And last but no way least 

5)  I'm going to be a godmother!! My lovely cousin is having a baby boy and he is lucky enough to have me as his godmother ;) (I joke) 

So yeah all is good in the whole world of Rosie! 

New diet!

So the past week I've cut out (where possible) Wheat, Gluten, Dairy, Yeast and Legumes in hope of  helping to ease some of my MS symptoms. so far so good.. its actually been alot easier than i thought it would have been! I've found a really nice healthy dairy substitute called 'Koko' so thats made life a little easier haha!

I've also made some wheat/dairy/gluten free granola bars which are a nice substitute for chocolate!

The recipe was pretty simple to!

1 1/2 cups of gluten free oats
1 cup of dried fruit
1 cup of nuts (chopped)
1 1/2 cup of honey
1 tablespoon of chocolate powder (not compulsory)
1 tablespoon of vanilla essence
1 tablespoon of cinnamon

Method:  (preheat oven to 165 degrees)

1) add the oats, fruit and nuts together in a bowl
2) Heat the honey in the microwave for 30 seconds, add the chocolate powder, vanilla essence and cinnamon into the same bowl as the honey whilst its warm.
3) add the honey mixture to the oats, fruit and nuts
4) place the mixture in a tray to go into the oven for 20-25minutes
5) once the mixture is out if the oven use a spatula to squash down the mixture to its more confined
6) once the mixture is cool you can cut them :)