Liebster Award Nomination

Wow! What can I say, except, thank you Jen from Trippingthroughtreacle  for nominating me for the Liebster Award. I am a little overwhelmed, as I love reading Jen’s posts, and it feels nice that she has us, her “MS family” to help with any advice, and just our general “yup, we get it” comments!.

So, what is the Liebster Award Nomination I hear you ask…

“Originating in Germany in 2011, the Liebster Award 2017 is an online award that is given to bloggers by other bloggers. Liebster translates to sweetest, kindest, nicest, dearest, beloved, lovely, kind, pleasant, valued, cute, endearing, and welcome. The Liebster Award recognizes new and upcoming bloggers that have the potential to grow and become successful influencers within the blogosphere.”

My nominees:-

Alyssa fight ms daily

Sarah Myjourneyafter50

Shannon MSnubutterflies

Jen Tripping through treacle

Cooking-without-limits

Nominees – feel free to answer the questions below or to reveal 10 facts about yourself as I have chosen. There is absolutely no pressure to take part though! I just wanted to let you know how much I enjoy reading your blog.  The instructions are at the end. 🙂

Questions:

Does blogging replace or enhance keeping a journal?

Do you think education, as it is today, does justice to life and learning?

When do you find time to blog?

What is the one post made by you that you like the most and why?

What is your favourite book or series?

Would you rather explore the deep ocean or outer space?

How long would you survive a zombie apocalypse?

T-Rex or dragon?

If you would be a character in someone’s book, who would you get to write it?

Have you ever visited a place just because you saw it in a book/series/animation/movie? What was that place?

How has writing/blogging affected your life?

Ten facts about myself:-

My first waitressing job, I placed the small “floating tea light candle” in a customers glass of white wine instead of the glass of water which was on the table…it was valentines day also, and I was wishing the couple a lovely evening as I was lighting the candle. He laughed, she not so much. 🙂

I have in my possession, a scarf which once belonged to the bass player of a famous Australian rock band.

I love all music –  funk, soul, blues, but my all time favourites are, Johnny Cash, Janis Joplin, Nina Simone, Billie Holiday,  Creedence Clearwater and Neil Diamond.

In my head, I am a brilliant harmonica player. In reality however, some people may beg to differ.

I once dressed as a Zulu, and danced on a carnival float for my local pub, whilst singing along to the backing song of “The lion sleeps tonight”. We came second. And yes, there were more than two floats!

I cry. At everything.  My brother has nick named me “Tiny Tears Toni” as all I seem to do is cry.

I never forget a birthday.

I’m a little bit quirky, kooky – which isn’t a bad thing in my eyes. 🙂

About 20 years ago, I played tambourine on stage with the Super Furry Animals. It only lasted 5 minutes, and dare I say, at the time, I didn’t have a clue who the band were! Fun times though.

Rules for nominees:

– Thank the blogger who nominated you and link back to their blog in your post.
– Upload the award to your blog. It can be done as a blog or on the sidebar.
– Answer the same questions I have above or share 10 facts about yourself.
– Nominate 5 blogs who you believe deserve to receive the award.
– Notify the nominated bloggers so that they can accept the award.

Thank you again Jen for the nomination!.x

Namaste. x

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And another relapse…

I’ve been on a relapse for seven days now and I only freaked out, and burst into tears once! I’m getting better!. Remember the heavy left leg, which I have put up with on and off for over a year? Well, it decided to become even more heavier, and difficult to walk – my poor body telling me to stop and take some time out. We’ve been understaffed a little at work, so I was doing way too much, and going up and down the stairs at work too many times than I should have been – it’s just the timing isn’t great, but I guess I can’t help it.

So, I have been resting. And resting. And my goodness isn’t it boring. I watch Ellen every day as I need to laugh, be happy and not stress out with what’s going on with my leg, lesions etc, so she has helped, big time!.

I have spoken with my MS Nurse this morning, and she doesn’t want me to rush back to work if I feel “a little better”, only when I feel “a lot better”. My GP has just said the same and has signed me off for another week. I have also just spoken with my boss to tell him, and he doesn’t want me back until Monday week, so I guess I can rest some more, and not to worry about rushing back with a day in mind.

That’s the thing with MS, and the difficulty in trying to explain your symptoms and what a relapse means, especially to your boss. I can’t say, “oh, I’ve been resting, so I reckon I’ll be back to work next Wednesday, as I can’t be certain.  MS is such an unpredictable disease. And the situation at work next week wouldn’t have changed.

So, Monday. The leg was feeling better, but not the best. It’s not numb. I can still walk. I’m trying not think about the “what if’s”. I guess it is what it is. First relapse in about a year, so not bad going I guess. And a year ago?. Well, I was in tears almost every day, probably making everything worse, and thinking “this is it”. Then come the New Year, back to work, and back to the norm. Gotta laugh I guess – better than crying!.

So, I know I will get there. Support all around which helps, and makes life a little bit less stressy. Especially when you know in the back of your mind, your lesions are probably having a party in your brain, but you just ignore them in the hope they wont party for too long. :).

Bit blustery out here today, but I stopped earlier, opened the back door, and breathed in the fresh air – life is pretty good, considering.

Namaste. x

 

 

 

Around, and around I go…

My poor brain – haha, not literally, but pretty ironic. Since my last blog post, I have been going around in circles regarding Copaxone.

I’ve been reading more reviews, as you do, and I’m not liking some of the side effects. I was aware of the heart palpitations, tightness in the chest, the aches etc which should only last ten minutes after each injection, but I am not enjoying reading about a few more side effects which include, possible closing of the throat, and the kicker for me, permanent skin indentations of the skin in injection site due to loss of muscle.

I also have asthma, so I am really struggling as to what to do.  Do I give it a go and hope for the best and try to stop the nagging voice in my head telling me ‘knowing your luck, you’ll probably get hit with all of the above’!.

If I decide to give Copaxone a try, it has to be for at least six months. It doesn’t seem a long time, but for an individual who has to self inject three times a week and try to deal with side effects, it feels like a lifetime – every two weeks is enough for me at the moment!.

My dad asked me yesterday over Skype, “what if you stop treatment all together”?. Yes, great minds think alike!. I would most definitely suffer a bad relapse, which can result in an increase in lesions, symptoms etc. Not always the case, but a risk.

I had my blood test on Thursday, and will speak with my MS Nurse next week regarding the results and all of the above. The decision however, will still be up to me. I will get there. I need to. I had last Thursday and Friday off work as holiday, and depression, fatigue and sleep, filled my two days off work.

On a lighter note, we will win the lottery – I will give up work, stop all treatment as I won’t be working so may feel better, and happy days – nothing like ambition hey!. :).

Take care wherever you are in the world, and I guess I will definitely stop this weekend and have a smell of  those roses…

Namaste. x

 

 

I really want to get off this ride now…

It’s no lie when you hear the words “it’s a rollercoaster ride”. I’ve been on this ride for 7 years now, and I knew it would be bumpy, very bumpy some days, but I really have had enough now. I just want to get off the ride for a day or two, and do some normal every day things without feeling utterly exhausted after an hour or so…ahh, the dreams us MS’ers have!.

Anyway, feeling sorry for myself doesn’t get me anywhere, but the past 18 months is slowly taking its toll on me. 18 months since I started self-injecting with Plegridy, and I have been feeling pretty rubbish. A  few mild relapses lasting two-three days, and I’ve been plodding along, because that’s what I have to do. As you know from previous posts my white blood count has been low, very low, but nothing to be concerned about.

I received a letter from my MS Nurse last week asking me to book myself in for another blood test in October. I booked it, and gave her a quick call. My last blood test in June shows my white bloods to be low, not surprised, but now my platelets are low, very low! Then we discuss how I’ve been feeling since June. Nothing has changed and I’m honest with her, brutally honest with her. I hate this disease. I work Monday to Friday, and some weekends I don’t even leave the house because I am exhausted. When its injection weekend, well, that’s always a write-off because of the flu-like symptoms. Then Monday comes and I have to get myself together to face another working week. I’ve just had enough. She said it’s no wonder I’ve been feeling so low, fatigued, no energy etc, because of my bloods and the side effects of injecting. We then discussed changing my treatment as Plegridy obviously isn’t working for me. When I said to her, “I thought this was it – I thought this is my life now”, she said no. Just because you have MS, this is no life for you. Then the tears of frustration, anger maybe, came. I needed to let all this out. The great thing about crying on the phone to your MS Nurse, is that they just get it. They know we don’t want sympathy. She quietly talked over my crying and snotty rant, and calmed me down.

So, I was asked to think about changing my treatment to Copaxone, and I’ve decided I will. From injecting once every two weeks, it will now be three times a week. I was freaking out about site reaction marks as mine seem to fade after four weeks, but its all to do with my bloods. Come off Plegridy, fingers crossed my bloods increase, and Copaxone is the treatment for me – hopefully!.

I’m dreaming of duvet free weekends, and enjoying my life even more…

Don’t forget to stop a while for a smell of those roses…they will pass you by.

Namaste. x

 

And just like that, another month has flown by!

July, didn’t it fly by!  I celebrated another birthday – nothing to get too excited about. And my sister, brother-in-law, and my adorable niece arrived in the UK from Australia for a visit. I haven’t seen my sister and bro in law for 5 years. Not since they left the UK for a new wonderful life in Australia. And my niece, well, it was our first greeting! Skype is amazing, but to actually meet this adorable little human in the flesh, well, I have no words, apart from pure love just filled my heart when I saw her. She celebrated her 1st birthday, (a week after mine), and she did really well considering all the traveling which was done. I miss them dreadfully, and hope to make the trip back home to see them, and all my family and friends soon.

After family visiting, I had a bout of stomach sickness, fatigue, and generally just feeling rubbish. August has been mildly better, yay! Fatigue doesn’t seem too bad since I’ve been on Plegridy, but regarding the side effects, I just feel wiped out pretty much all the time. My white bloods are still really low, but nothing to be concernced about, however, it does make it harder to fight any sort of bug. Isn’t it amazing how we somehow just cope? Its been 16 months since I started injecting with Plegridy, and it hasn’t got any easier. Each injection still hurts, I still get site reaction marks, and the side effects didn’t disappear after 6 months as I was told, but I just have to get on with life. It feels like the end of the world some days, believe me, and I know my regular readers will know, that I have broken in the past, and still do. It’s hard being strong, positive, brushing the “oh I have MS” under the carpet some days, and on some occasions, my poor body and mind just need to let it all out. Then the hero will crack some silly joke putting a smile back on my face, and away we go to face another day.

I follow a few MS’ers on social media, and a couple of them are struggling at the moment. My heart really goes out to them. I wish I could do more, but I can’t. The main thread however, has been how grateful they are to their “online family” for giving words of encouragement and support. I guess it probably doesn’t seem much writing a few words of support, but to the individual who is receiving these words, it means the world to them.

Look after yourself, support one another when we can, and don’t forget to smell those roses. 🙂

Namaste. x

 

 

The seven year itch, which won’t go away…

I was meant to blog yesterday, but my good ‘ol pal fatigue turned up, so it was a day of nothing.

Seven years ago yesterday, I was hit with my first symptoms of MS (didn’t know it at the time). Numbness on the left hand side of my head and face for four days, then the numbness spread down my neck, shoulder to my elbow. To the doctors it is then! Waiting for the results of numerous blood tests and neck x-rays seemed to go on forever, but a week later the results came back…all normal. The headaches were still hammering in my head, and the fatigue was, well, you can imagine. The numbness has now spread to the whole of my left arm. So the left hand side of my head, face and whole arm is numb…such a bizarre feeling.

I have now been signed off work for three months. It was a tough time. Another trip back to my GP and he was on the phone to the local hospital, booking me in to see a Neurologist. A very, very, long story short. After an MRI scan showed lesions on my brain, a chat about the “possibility” of MS was discussed. Further blood tests, MRI scans, and of course, the lumbar puncture! It was the worse experience I have ever had to endure. I obviously needed more local anesthetic, as when the nurse proceeded to insert the huge needle into my spinal canal, well, lets just say, my choice of words weren’t pleasant, but under the circumstances… Second time lucky, the needle was in, but it didn’t stop the tears rolling down my cheeks. I hated every moment of it. It wiped me out for two weeks after. Nausea, throwing up, and I literally thought my head was going to fall off! I couldn’t sit up without the pounding in my head, well, not pound!

I never googled lumbar puncture, not until a few years later. Now the pounding in my head makes sense! Eurgh!

Six months later, the numbness disappeared. Just like that!. I still wasn’t given a definite diagnosis of MS. Just, “it may be a very mild form of MS”. So, I plodded along. I went back to work gradually for a couple of months, then back to full-time. By the middle of 2011, I applied for the “early redundancy package” from work. A package I was grateful to have the option of applying for, accepted, and at the right time! Roll on July 2012. I have not worked for 7 months, and feel great! Just a few fatigue days, but I don’t have to worry about work or be anywhere. And the house has never looked so clean! Then two weeks I recall before my 40th birthday, I was finally diagnosed with “mild MS”! HOORAY! At last! Two horrible years later, I have a diagnosis. I can now start to re-evaluate my life and work out what I can do to make this disease stay “mild”, and continue living the life I was living previously…but, life doesn’t always work out that way…

It’s a beautiful Sunday morning here. The hero is cooking, and the smells coming from the kitchen make my heart sing. We have the most wonderful array of birds munching outside on their bird table, and I am one happy individual!

I have stopped today to smell those roses…what more can I ask for. 🙂

Wishing you all a lovely Sunday.

Namaste. x

 

 

 

 

 

 

 

 

It’s been up and down…

It’s been four weeks since my last post, and it has definitely been an up and down roller-coaster ride! I was fatigued for four days of my ten days on leave, but so grateful I was on leave and didn’t have to phone into work every day. It was hot here also, so I guess a no- brainer!.

The hero had a great birthday, and I managed the fatigue (in the heat), to enable us to enjoy the day I had planned for him. I surprised him with VIP, all day tickets for Longleat Safari Park, and we spent 40 mins with the keeper of the Red Panda’s feeding a gorgeous couple of Red Panda’s!. The hero didn’t have a clue, and absolutely loved it! Then it was a fatigued few days, then back to work!

1st June was my appointment with my Neurologist and MS Nurse to discuss how I am getting on with Plegridy. It was a year in April since I started injections with Plegridy. This has been up and down also. The side effects still hit me for a couple of days (flu-like symptoms), but all in all, nothing really to complain about…and no, even after a year, the injecting doesn’t get any easier! He did give me an option of switching to Copaxone. Copaxone is again, self injections but doesn’t come with side effects! Yay! But I would need to inject three times a week, as opposed to once every two weeks. Boo. 😦  Even though Copaxone doesn’t come with side effects, I will experience tightness in the chest, and palpitations for about 10-15 mins after each injection. Injection site reactions will be the same as Plegridy though. So, I am still researching and weighing up my options. I understand Copaxone is a little “stronger” than Plegridy, but as I haven’t had any major relapses since I’ve been on Plegridy (My Neuro confirmed the Vertigo episode was not necessarily a relapse), I really don’t know whether to make the switch?…the injecting three times a week, with injection site redness is really putting me off though!

Next MRI scan will be in January 2018. It would have been two years since my last MRI, so I think I will wait and see if any (and hopefully none) activity has been happening in those two years…we always cross everything humanly possible that there isn’t anything new, don’t we!

From my appointment on the 1st June, I have been doing OK. We are just coming out of a five-day heat wave also, which to be honest, did get to me, but I coped. I am so happy it is getting cooler again though.

And that has basically been my last four weeks. Bit fatigued, then feeling good, then a bit of fatigue again!.

I still smile through it, and still try to make people laugh and smile with me – and for the last week or so, I have been stopping to have a smell of those roses, and it has been wonderful.

Keep smiling 🙂

Namaste. x