Archive | February, 2013

Well I never ………

27 Feb

I learned this morning from my neighbour whilst walking home from the school run that another parent from the same year has just found out he has MS.  I have been standing next to someone else who has been in limboland and never knew it.  Now that is a small world when you consider the stats with MS.

I have a slight quandary, we dont know each other but I want to reach out to him and his wife.  They have 3 young children and I want to let them know they are not alone and if I can help in anyway at all I am there.  Trouble is I dont know where he is at emotionally.  I don’t want him to think me and my neighbour have been gossiping and I also don’t want to assume that he would be happy to talk about it etc.  Must tread carefully as I’ve always been known for being a ‘quirky, look at things differently from most’ kind of girl.

Not sure where I am at the moment.  One minute I am happily in denial land, next minute I am looking at the DMD list and thinking, this is not much of a choice now really is it!!  Then I’m crying, scared witless of what will happen in the future.

I was crying for a whole other reason on Monday and yesterday.  My dog has cancer, I am just waiting for the biopsy results to tell me whether it is malignant or not.  My boss, aka my Vet, is probably dreading it coming through.  He will not want to give me bad news on top of my own bad news.  He has been brilliant about my MS, I was shocked to hear that his uncle has it.  I was very sad to hear that and at the same time very grateful to have a boss who knows, a, what MS is and, b, the variations and complexities of it all.

I have mentally given my Neuro a Superman cape, he is my hero at the moment.  That may change when I’m having a big needle inserted into my back but hey ho!

I hope my MS Nurse has a sense of humour because I will be a patient that laughs a lot and tries to find the funny side.  It is the way I cope, I’ve always been the same, I get it from my paternal side of the family.  We ARE GREAT, god I miss my Nan 😦

My step sister and brother have not contacted me at all, she is a blumin Nurse!!  Musn’t judge because I cannot judge others by my own standards but I don’t need to spell out my feelings on this do I?

A life changing diagnosis really opens your eyes up to the world around you.  People who you thought would love and care no matter what suddenly start tripping up on the pile of crap they have been carrying around with them, so well hidden.

It’s not just the diagnosis you have to cope with, it’s all the crap that comes with it.  People in the family have crossed a line that is final.  I’m a grown up, I will handle it, hard as it is.  When the support is taken from me, then it is taken from my son and husband.  They are going through this too, my son is 7!!  Yes, 7, that is all……..


Well, it’s official

18 Feb

I have MS.

My next pleasure is the LP.  My Neuro explained that the LP is something he likes to do before going down the DMD path.  In the meantime, I will be contacted by the MS Nurse and he will arrange some Neurophysio to help with gait.

Not a long post tonight, I feel weird, I wanted my GP to be wrong.  I posted on the Society forum and as usual Rizzo was there with her usual kind and wise words Xx

p.s I will keep posting about being in Limboland, I just need to get my head around today.

MRI Scan

13 Feb

An essential part of the diagnostic process for any neurological issues, but it is a strange experience.  I will try and recall my scan as best I can…..

My appointment was in November 2012 and was an evening time slot.  Hospitals take on a very eery feel in the evening.  It was very dark, hardly anyone about and I felt nervous, all the ingredients needed to make one scarper for the hills!

I made my way to the X-ray Department where I found it completely empty, not even a member of staff behind the desk.  There was directly in front of me, a telephone with a large sign requesting patients ring the number to alert staff to your presence.  For a minute, I had a funny moment in my head, I suddenly felt like a Nurse in an emergency, calling for a Doctor to come save the day, but I soon got down to business and dialled the number.  The Radiographer told me to take a seat and she would be out shortly.

I sat down and this young woman came out, I thought to myself that I had reached that age where everyone that I needed help from were fastly becoming younger than me.  When did that happen??!!

She asked me if I had completed the form they had sent with the appointment letter.  For limbolanders awaiting your scan, they normally send out a questionnaire to check if there is anything that may hinder the scan going ahead but its really simple to fill in.  She double checked my answers and we went to the scanning room.  Once we got in the room, I realised the one mistake I had been reminding myself of for weeks – I forgot to take my underwired bra off!! pfft, could not believe I forgot lol!!  Anyway, I took that off and she showed me to the head Radiographer sitting in their protective booth.  She lead me into the room with the scanner, and I remember thinking, jeez that machine is BIG!!

It was a very well lit room, quite chilly but my nerves kept me fairly warm.  I sat on the stretcher type bed that takes you into the scanner.  I turned to listen to her talking and she told me that the Neurologist had referred me to her and that he had asked for a thorough scan of my brain and spine.  I was a little taken a back but not surprised as thanks to the brilliant Rizzo I knew he had found anomalies during my clinical exam from the waist down.  She told me to lie down and keep very still.  She explained that the machine whilst scanning would be very noisy but they had headphones which were playing Radio 2.  She gave me a panic squeezy ball attached to the scanner in case I felt panicky.  Now, this is the advice I wanted to give, if there is any and I mean any chance you may get panicky, see yor GP about getting something to calm you.  I kept my eyes shut once the bed started moving into the scanner.  I kept them closed; I did however open them a couple of times for a very short period because my curiosity of being in such a machine made me open them.

I say all this because the MRI scan is a very important part of the diagnostic process.  I had to make it through, it is your body’s chance to once and for all, prove there is something lurking.  It is also reassuring to know that your brain and spine are being thoroughly looked at.  If the scan is clear, then at least for the moment, nothing ominous had been found and that is always a fantastic thing!

Whilst the scan was going on it was noisy but strangely calming.  I had a very emotional moment when the radio started playing our wedding song, Someone to Watch Over Me, by Frank Sinatra.  It was the Rod Stewart version but was still lovely and very moving.  We got married in October last year and it felt like my husband was there with me.  I tried my utmost not cry as I was worried I would cause bluring of the images, tears were rolling down my face!  I also kept thinking of the people on the forum and kept seeing their profile pictures; they were there with me too.  I didn’t feel alone.

I was aware I was in a long tunnel and when the spine bit was being done the bed moved about a little bit as it is taken in sections.  The Radiographer keeps in constant contact with you so you know exactly what is happening and when.  That took about 30mins.  Then we had a quick breather, then I was back in for the brain.  Now, the most important thing for me when I went in for this, was that they actually found my brain, as this has been in question over the years!! lol!!  A cage type thingy was placed over my head and clipped either side.  There was a little mirror for me to look into which I did very quickly and then closed my eyes again!!  This took about 20mins.  All in all I was in there just under an hour.  My back hurt, my arms went completely numb and I hobbled out of there like an old woman but the job was done.

It took a long time for the results.  Some people get their results quickly but some it takes ages, so I just wanted to warn about that.

Nothing I can say will prevent anxiety over having this done but it really is fine.

The only thing I will say that I took from the whole experience is that you have a long time to think in there, and I realised properly for the first time just how fragile I/we all are.

Fear in Limboland

12 Feb

I would like to address this today and its in response to a fair amount of Limbolanders on the forum.  There is a lot of fear around you see and I want to try and put a positive spin based on my experiences.

When I saw my GP a couple of weeks ago, one of the things he said to me was, ‘you have probably had this for a very long time’ (he is sure it is MS).  This keeps churning around in my head and I have com to a very positive conclusion – I have made many achievements, yay!!

I have always managed to keep in work, until 2011 when I was made redundant (this I note is becoming the norm :/)  I became a mummy.  I have worked for many years in the veterinary industry, which is a real passion and love of mine.  I have studied in Health & Social Care (and there you are stumbling doing a degree with honours!!), the old GNVQ which is another educational triumph for the powers at be!!! (not) and looked after the elderly; a great time in my life which I will always hold dear and never forget.  Completed the foundation years of Counselling training and I just need to get the finances in order so I can complete my Diploma, which I WILL do.

You get the gist.  I really wanted to show that if I have been suffering from MS for many years, I have still achieved, still got what I wanted.  Having children is something I always wanted and before I became pregnant, I did worry a lot about my fatigue.  My son is 7 and is my sunshine, he is the definition of unconditional love.  I have fertility issues and we really wanted another but its not meant to be.  I am 40 and concerned for the future but if I could get pregnant I would have another.

Please don’t worry about what may happen, it is easier said than done I know but if the time came and I lost quite a bit of my mobility, I am hoping that I will have less if onlys than what ifs.

I feel sad at the thought that I may not be able to jig about to music while doing the housework or ironing.  So now, I make sure I have a little wiggle daily.  This morning it was Justin Timberlake on one of those music channels, it was going through his back catalogue.  I want to do things while I can.

As soon as you lie in an MRI scanner, you realise this could be serious, it certainly felt serious to me.  I am going to do an MRI scanner experience post tomorrow.  I want to talk about that as a single experience to try and help anyone who is currently waiting for their scan.

Miserable Moo Day

7 Feb

This post comes with a warning – I am moaning.  I feel I am being unkind but its how I feel.

I visit the MS Society many times during the day in between chores, resting etc.  lately it has been getting right on my nerves.  I have been feeling this way since my GP visit last week.

Why is it now that I find myself tutting at people who aren’t happy with their clear MRIs?  I understand completely that if scans are clear and you feel horrid, then you need answers, I totally get that, I’ve been like that for years!  What gets me are the people who appear to want or need it to be MS.  Why?  Why pick this disease, what is so attractive about the prospect of having an incurable disease?  Yes, you may be unwell but why does it have to be something serious, incurable?

I likened my symptoms to MS yes, but I never assumed anything.  I have always said neurologically challenged, in limbo, which meant anything neurological.  I only knew it fell into that category due to a conversation with a very experienced Nurse.  I am still holding onto a tiny slice of hope my GP is wrong and that my Neuro starts off the appointment with, ‘good news’.

To me, to make symptoms fit into a condition that is similar to what you are experiencing is dangerous and not healthy.  I sincerely wish that every single person who posts finds out what is troubling them.  I try and help as much as I can, I wish I could wave a magic wand and solve everything but I can’t.

Why am I feeling like this?  Has anyone else?  I feel really bad, I’ve not posted as regularly as I am worried about what may come out!!

I hope this is a phase as I don’t like this version of myself 😦

Confused Emotions

4 Feb

Not entirely sure how this will go today, so I will just go with the flow.

It is a week today since my GP told me that my results look very much like MS.

I came home, my husband came straight out to find out what the Doctor said.  He was shocked, very shocked.  He went and got my mum, as she had phoned to speak to me and he said I was at the Doctors.  My mum would have worried herself silly so I had no choice but to tell her.  It went well, she was upset etc., but here is the thing, I have been ill for a very very long time.  So the shock here is that it now has a name.

This is where the confusion comes in.  You see, I have never spent a single day as an adult well.  I have never been diagnosed with anything in particular, just told it was probably ME and to go and buy a book on it.  Which I did.

Now, I haven’t received any support over the years from anyone, just fobbed off and laughed at.  Then, suddenly, since last Monday, people cannot do enough and feel guilty.  Why??  I am grateful for my mum now showering me with concern but did I really have to be diagnosed with a degenerative neurological disease to get it?  ME is not taken seriously, and I admit to not giving it much consideration either, it was the label given to me without any investigation.  That is a whole other discussion.

I find myself confused about this and the fact my mum is telling family members when I asked her not to is just not helping.  It is her way of dealing with it obviously.  It isn’t her news to give and although my GP certainly knew what he was looking at, I still haven’t seen my Neuro yet.

Once I see the Neurologist, I can get on with whatever he tells me.  I will follow what he says to the letter (I’m a bit like that).  I will go and have a detailed chat with my GP that everyone hates at the moment.  I feel lucky to have him, he has known me since I was little.    I am looking forward to working with him to get my life as good as it can be!

I am incredibly lucky to have support now but I have always needed it, at times desperately.  So for today it’s bittersweet.