One year ago

[Tania B]

I've realised that today is the first anniversary of when I was told by a neurologist that he strongly suspected I had MS and that I would need to have tests. Well, I think at the time I'd hoped the tests might prove that wrong. Some day,s for a few moments, I still imagine that it's all been a bad dream Silly me!

 

Still adjusting.

 

Tania

[jeni]

Hi Tania,

 

A year today, and I bet if you look back to how your life was affected then, and to how you are now,you will see that you have adjusted to your condition more so than what you think.

 

Take Care.

 

love Jeni xx

[Akorah]

i was diagnosed on april fools day!!

[Dianni]

Hi Tania

 

I think you have coped really well to be honest. I also think that regardless of how long we've had a dx, we are continually adjusting because the nature of this disease is so unpredictable and it is life changing.

 

You wil get there Tania.

 

Hugs

Di

xxx

[jeni]

Aah Chelly,

 

What a date to get told that new's.

 

I apreciate that any date is not welcome, but that date!!!

 

Hope you are still feeling well after your holiday.

 

Take Care.

 

love Jeni xx

[Hezza]

Hi Tania,

You're doing really well hon. In the grand scheme of things a year's not a long time and, as Di has said, we're all constantly adjusting.

 

as it may seem I make a point of doing something to spoil myself every year on my MonSter's birthday. Maybe some of my favourite cupcakes or a pub lunch but I make sure I do something lovely for me.

[Tania B]

Thanks for your comments folks.

 

I've still got the anniversary of my actual diagnosis coming up near the end of November so I think I'll follow Cara's advice and try to spoil myself a bit that day in some way.

 

Di - When you say MS is unpredictable that so's true but I'm adjusting gradually to the reduced me.

 

Tania x

[Akorah]

Aah Chelly,

 

What a date to get told that new's.

 

I apreciate that any date is not welcome, but that date!!!

 

Hope you are still feeling well after your holiday.

 

Take Care.

 

love Jeni xx

 

Hi jeni yeah i thought that too was hoping maybe it was a joke but nope!! Anyway ive had 6 years to adjust now and feel im not doing too bad but i think after just a year i was pretty much at where tania is now coming to terms with it all. Out of interest was anyone else offered the newly diagnosed MS course after diagnosis? My MS nurse runs the course about every 6 months it lasts 6 weeks just 1 night a week and they invite nueros, ms patients, physios and other ms professionals and you can ask questions and learn what it all means they also encouraged me to bring my daughter who was 15 at the time and my hubby it really helped me to understand. And as for my symptoms they are beginning to creap back a bit now after my hols but i had 2 great weeks with no pain so im not gonna complain!!

[jeni]

Hi Chelly,

 

Had you been having test's for a long time? Or was you diagnosed fairly quickly?

 

I am sorry that your symptoms are begining to creep back, but what a good way to look at it that you had 2 really good weeks holiday away from it.

 

I personally cannot coment on the MS course, but it sounds a very good idea and one should I be diagnosed, would be interested in going on.

 

Take Care.

 

love Jeni

[Akorah]

Hi Chelly,

 

Had you been having test's for a long time? Or was you diagnosed fairly quickly?

 

I am sorry that your symptoms are begining to creep back, but what a good way to look at it that you had 2 really good weeks holiday away from it.

 

I personally cannot coment on the MS course, but it sounds a very good idea and one should I be diagnosed, would be interested in going on.

 

Take Care.

 

love Jeni

 

Hi jeni i was really quick getting diagnosed woke 1 morning with no feeling down 1 side admitted to hospital had MRI next day then got results day after! I count myself very lucky in this respect as id hate to have to wait and worry although i realise now id been having symptoms for quite a while before. I hope you get some piece of mind soon it must be hell not knowing!

[jeni]

Hi jeni i was really quick getting diagnosed woke 1 morning with no feeling down 1 side admitted to hospital had MRI next day then got results day after! I count myself very lucky in this respect as id hate to have to wait and worry although i realise now id been having symptoms for quite a while before. I hope you get some piece of mind soon it must be hell not knowing!

 

 

Hi Chelly,

 

That must of been terrifying for you? Did lesions show on the MRI? I guess they did?

 

Yes when you look back you remember things dont you?

 

I started having a lot of back surgery at the age of 31, but in those day's you did not have MRI's you had something called a myleogram after many myleograms over a long time.I was operated and operated on, but I did not get any better,they then said that they thought I had developed Arachnoiditus (Spiders Disease), But over the years I have got progressively worse, so here I am at my age having tests for MS.

 

But to go to bed OK and to wake up in the morning numb down one side, that as I said earlier was a dreadful thing to happen to you.

 

Did you have any idea that there was anything wrong with you down one side prior to it happening?

 

Take care.

 

lovre Jeni xx

[Summer]

Hi jeni i was really quick getting diagnosed woke 1 morning with no feeling down 1 side admitted to hospital had MRI next day then got results day after! I count myself very lucky in this respect as id hate to have to wait and worry although i realise now id been having symptoms for quite a while before. I hope you get some piece of mind soon it must be hell not knowing!

That was quick! Yes, I didn't deal well with the wait and worry aspect of it, I decided to get on with life, I felt I had to because I am in my fifties now and time goes fast enough as it is, which I think is Tania's point really.

 

I wonder how many other people were diagnosed on special days like April Fools Day or even Friday the 13th, I don't suppose you would get Christmas Day or New Years Day unless you were an emergency admission for something in hospital? Would they even tell you on those days?

Edited 14 Aug 2010, 7:58 pm by Summer

[Akorah]

Before waking up and realising i couldnt feel my right side then promply falling flat on my face id had a numb right leg before which the doctors said was a trapped nerve. I had never thought of MS and didnt really know what it was i remember saying to my hubby ahh it could be worse it could have been something that was painful lol little did i know!! I dont think i would have coped if i had had to wait as my mum had just died from a massive stroke 5 months before so that was my first thoughts. Im 39 now and my mum was just 54 when she died so i think if i didnt know it was MS now i would have worried myself into a state. which in its self would make the MS worse! Anyway i know now and im dealing with it a day at a time and im still walking so im happy!!

[jeni]

Hi Chelly,

 

Yes I can quite imagine that you must of thought on waking to your symptoms, that you must of had a stroke.

 

Especially with your "Mum" having one at her age and I am sorry to read that she died from it.

 

Yes to be quite truthfull I did not know much about MS, and when it was mentioned to me I thought no it can't be that because you dont get pain with it!!!!!!!!!!!

 

But your philosophy of dealing with it Day by Day seems like a good one to me.

 

Take Care.

 

love Jeni xx

[Tania B]

Chelly,

 

I'm so sorry to hear about your mother and how she died so young and thank for putting MS in perspective. I admire your pholosophy of taking things one day at a time too.

 

Tania

[Akorah]

Hi Tania and thanx. The way i see it MS is like a fairground ride with all the ups and downs and i never get bored coz everyday is different. Everything in lifes got good and bad points!! Before MS i took lots of things for granted and now everyday im proud of myself for something. Even on a bad day everyone with MS can smile to their selves and think yup i did it and im proud even if its just staying on your feet for 5 mins!! We should all be proud of ourselves in some way i think MS has had quite an impact of my life and the way i live it and not all of its bad. And anyway i wouldnt have met you lot if i didnt have it too so there are good parts

[Tania B]

Hello Chelly,

 

I see what you mean. I have some days when I do things that are hard and when I manage I almost congratulate myself.

 

By the way, I can spell philosophy really.

 

Tania x

[Akorah]

hi Tania lol i didnt even realise you spelt it wrong

[Dianni]

Hi All

 

I'm going to a newly dx course in September. Better late than never though I think I slipped through the net a bit as I changed neuros and health authority responsibility in January.

 

I have to agree Chelly that MS isn't all bad. I've met some lovely people, made some fantastic friends and have a better social life now than I've had since I was a teenager!

 

I try to do something positive every day. It might be sweeping the floor or pulling up some weeds in the garden. I even see playing with my grandsons as something of an achievement.

 

I'm learning to enjoy and make the most of good days and sitting back and letting the world get on with it all when I'm having a less good day. (Though this is far harder than I ever thought possible!)

 

I have yet to accept that the on the good days I still have limitations and I suffer for a few days afterwards, but I've decided it's worth it

 

Hugs

Di

xxx

[tdkstratus]

Hi All

 

My date of diagnosis will forever be carved in history for me. It was the day after Michael Jackson died! So when people celebrate his life each year on that date, I celebrate a new chapter in my life and look to the future.

[Tania B]

Thanks Di and Terri for both being a positive inspiration. Well done!

 

Tania

[Tania B]

Today is the actual anniversary of my diagnosis. For this reason I can't seem to get the thought of MS far from my thoughts.

 

I just finished a 7 week health information programme called the Expert Patients' Programme at my local MS Therapy Centre on Monday (which is one of my non work days). It's designed to help people with chronic health conditions. All except one person have MS.

 

I confess that I felt a little taken back when one man said he'd also been diagnosed for about a year and he needs a wheelchair or a walker, has very poor eyes and slurred speech. He mentioned on Monday that he was taking a break from his injections (Rebif). Once agian I was reminded how very variable this MS is and how blooming unpredictable.

 

Tania

[happyandy]

November 2008 ......

 

I remember my sister giving my wife and myself separate "Good Luck" cards as I was going for a dxon the Tuesday and my wife was going for a liver resection which we all hoped would cure her of cancer.

 

I got dx'd with MS and the operation on my wife was an "open and shut" as they found more cancer in her peritoneum. As she was coming out of the anesthetic, the Prof explained they had to backout the op and that there was no more that they could do.

 

The thing is, as your post inferred, no matter how shitty things get, there is always someone worse off.

 

And my sister will not send out any more "Get Well" cards.

 

Andy

[Lindyloo]

Tania

 

I think you are doing really good ... i love some of the positiveness of some of your posts especially the lovely Chelly and Cara!!

 

 

Cara i saw you write this before somewhere about what you do on your Monsters Anniversary... FANTASTIC..love this idea alot... I think i will do this also... i will spoil myself rotten.. we all should..

 

Tania, time is a healer... each day is different... it took me a long long time to get used to my symptoms.. sometimes i am shocked at how i have adapted and dont notice symptoms anymore. I remember checking my body every day when i awoke... i freaked out about every symptoms thinkin i was starting to relapse again... It was nitemare time.. It has taken me along time to get to where i am now..

 

Someone said here we are still adjusting... thats true!! i am diagnosed 10yrs... *cant believe it has gone so fast*..

Meeting you lot here i have made some very special friends and on FB... i would be completely lost if i didnt have my friends here..

tania it is a journey. I still getting used to the 'Reduced Linda' ...I love this term.. it describes me perfectly, thanks Tania.

Keep Hope in your heart.. Our day will come for a breakthrough.. i think its around the corner..

Lots of hugs

Lindyxxxxxxxxxxxx

[Hezza]

Thank you Lindyloo

 

I hope you found the Expert Patient's Programme helpful, Tania. I am actually an EPP volunteer tutor and really do believe in the benefits of the courses - not just because of the material but because they bring people together who can learn from, and lean on, each other. Unfortunately EPP is not widely established in Scotland so I'll have to relinquish that role when we move but hope to stay involved with them in other ways.

 

How are you feeling today hon?