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. πŸ™‚

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 πŸ™‚

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 cantΒ  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. πŸ™‚

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,Β  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. πŸ™‚

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

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. πŸ™‚

Namaste.x

 

 

It’s been way too long…

I’m back! It’s been way too long, again, but here I am.

I’ve been struggling for the last few months. Very heavy achy left leg, which has been literally, dragging me down for the past month or so. Fatigue hasn’t been too bad, which makes a pleasant change, but I really haven’t had that much energy to do, well, not a lot!.

Yoga – I went back to class in January, then the vertigo came, then the heavy left leg, then the tears, and I haven’t had the energy to go to class. Again, I miss it, and I know since I haven’t been to class I am feeling worse, and I am sad to say, home practice has been non existent.

But, dare I say, like the Lotus Flower I am emerging from the murky waters once again! This is the “great” thing about having MS. Every day, week, month and even year is different! A bloomin scary different some days, new symptoms, old symptoms popping up again in case we have missed them, and then the dreaded downward spiral of “this is it” etc etc. My heavy achy left leg is gradually feeling normal again, and I am thinking about Yoga, meditation, and sorting stuff in the house, which is a big thing! Months of feeling sad, depressed, grieving for my old body and life, has lifted and its nice to be back.

No Nana nap for me this afternoon, which is another good sign I am starting to feel better, so I’m off to do some lovely household chores.

In the midst of all the above, I haven’t ignored those roses…you just never know what tomorrow will bring…

Keep smiling. πŸ™‚

Namaste.x

Happy Friday!

And another week is over!. I do love a Friday…who doesn’t. It’s been another busy week at work, and I seriously don’t know where the week went after Wednesday…just a big blurgh of rushing around at the office, and crashing out on the couch at home in the evenings.

My mate Plegridgy is going to make an appearance tonight also. Yep, another two weeks has flown by…I must be getting old, as I really don’t know where the time goes! lol.

But for now, its Friday afternoon and I don’t feel too bad fatigue wise. Isn’t it a great feeling when you think you can keep awake for maybe another hour, before your bodyΒ  tells you it really needs it’s Nana nap. I do cherish these rare moments after work.

So, I am going to make myself another cup of Green Tea, put a load of washing on, and just enjoy feeling OK for a while. πŸ™‚

Have a lovely weekend, enjoy the rain, enjoy the sunshine (if you are lucky to have any), and keep smiling…maybe stop and have a smell of a rose or two…don’t let them pass you by. :).

Namaste. x