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

 

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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

 

Ahh, and relax…

Well, I’ve made it through another week! It’s Saturday afternoon, and I now have ten days off work…ten days!

I have already planned out Monday. Have a lie in! Definitely have a lie in and enjoy a lazy day. Plegridy delivery is due between 2pm-4pm, so I cant  risk over doing it, having a Nana nap, and missing my delivery. Tuesday may be a Skype to my Papa in Australia, then for the rest of the week, I am going to potter around. I need to make sure I am well for Thursday. See, its the hero’s “big” birthday on Thursday, and I dont want to be so exhausted and fatigued that we cant leave the house, so I will potter, do a bit of tidying, sleep, and bake a beautiful birthday cake for the hero.

It’s such a nice feeling knowing I don’t have to set the alarm for ten days. I will let the birds wake me in the mornings with their glorious chorus, and enjoy the time off.

Have a wonderful weekend wherever you are in the world. I stopped to watch the bumble bees dart in and out of our heather bush this morning. 🙂

Namaste. x

 

Happy “belated” Anniversary…

Happy belated anniversary Plegridy!. Our one year anniversary was almost two weeks ago. Plegridy and I have had a love/hate relationship for the last 12 months. 27 injections later, and I think it is still a bitter sweet relationship.

The last injection, well, we stared each other out for an hour and half, then I was feeling so tired, I had to go in, then it was straight to bed. I’ve been feeling pretty rubbish since then. I am starting to question our relationship a little more, and I am looking forward to seeing my Neurologist next month to discuss, well, a gentle break up with my pal Plegridy, and see if there is something better out there for me.

Now, don’t get me wrong. Plegridy has been doing it’s job. I’ve only had one relapse in the year, but the side effects are still continuing…flu like symptoms and injection site redness. And I feel rubbish since I inject, then two or three days until the next injection,  I am feeling FINE again.

Take this week for example. It’s Wednesday. I am sitting here, its a gorgeous spring day, I’ve been to work and back again. Had lunch, sorted laundry and a few other bits and bobs. The patio door is open, I’m listening to the birds squabbling around the bird table, and I have Nina Simone singing her heart out to me in the background! It is bliss! I feel happy, non fatigued, and normal!

But, alas, I know deep in my heart this will not continue – two weeks have come around too fast, and it will be injection night again this Friday. So, I sing. I sing with Nina. I dance with Nina, and I make the most of it.

I also made it to Yoga last night. Could this also be the reason? I do believe it helps me, so I will continue to remove the mental block I have been having, and continue to go more often. 🙂

I will now say goodbye to you for now.  Wherever you are in the world, keep smelling those roses. On days like today, they smell even more fragrant. 🙂

Namaste. x

Enjoying the now…

Enjoying the now is my motto for this week. This week has been a good week!. My left leg is finally back to normal, and I am no longer shuffling along like an elder. I am walking, well, the best I can with MS. I have had one Nana nap after work this week, and that was mainly due to the fact I had the most shocking headache/mild migraine.

So far this week I have gone to work, cleaned, sorted out washing, the recycling bin, have cleaned the kitchen “spotless” after dinner each night, and have woken every morning this week before the alarm has had time to upset me!.

Now, this is where my little “MS mind” comes into play. I have been here before, of course I have, but each time the mind likes to go around in circles with, “is the January relapse finally over”?. Is it a coincidence I am starting to feel better again after I started putting the Magnesium flakes in my bath again?, or the Chai Tea I have started to drink again?, (I need to mix it up a bit in between the Green Tea), or the fact that I had to get my positive mindset back as I was starting to sink a little low, or the little bits of mediation I am doing, or the new Vitamins I am taking?

I go around and around, and once more for fun, and I need to just realise, hey, coincidence or not, it is what it is.

So, it is what it is, for me at least, but if all the little bits of the above have had a tiny part in myself feeling better, then I shall continue with what I am doing. I’ve been doing the above, plus the Yoga, for the last 5 years, so why change. :).

I am enjoying the now. I pray it will continue, but hey, we all know MS, and it does like to keep us on our toes!

I stopped a few times today to smell those roses, and they were just divine. 🙂

Namaste.x