Archive | January, 2013

No Mans Land

31 Jan

After a couple of days out I now feel more like an inbetweener than a limbolander.

I am definitely out of limbo, that was very apparent from my MRI and although my GP said that in his opinion I have MS, I am hung up on seeing my Neuro.  At least I know what was found on the scan, I haven’t got to hear it for the first time in a few weeks.

I visited the Society forum and I was advised to try and keep a very slightly open mind, which I will do my best but a very slightly open mind?  That is not good odds for it being something else.  The thought that keeps going round and round is, I have multiple lesions on my spine!  Help!!

So, until I see my Neuro, I need to stay positive but realistic.  I had some tears yesterday, once whilast ironing but then ironing can make me cry at the best of times!  Not a favourite job 😉

Then, last night, I felt angry.   Swings and roundabouts for a little while for me.

I have needed two alarms to get myself out of bed for a few years now but not even that worked this morning!  My husband had to tell me my alarms were going off!  My fatigue is worse than normal today but that is to be expected I suppose.

I really worry about my son, I don’t want to let him down.


Well, it seems the mystery is over :(

29 Jan

I had my GP appointment last night.  I arrived in plenty of time and I used it trying to calm my thudding heart down!  I didn’t feel too bad to be honest, I assumed he was going to inform me that I was fine physically and I was indeed both feet firmly in the fruit and nut camp.  Assumptions are dangerous and boy did I find that out!

I sat down and he said the Neuro wants me to start Vitamin D as it was slightly low.  He then didn’t sound like he was going to elaborate, so I asked him about my MRI results.  He turned the screen around and there were the words, multiple lesions on the spine – mid, thoracic and lumber, consistent with demyelination.  My GP said that to him, this was MS. I have to see my Neuro in February to get the official diagnosis etc.  He asked me if I was alright as I had a wobble and I said its better to do this now rather than waste my Neuro appointment.  I can now go in prepared and have some questions ready.

Multiple lesions eh?  How long has that taken?  My Doctor thinks I’ve had this a long time. I thought, no shit Sherlock!!

I remember getting into my car and immediately sobbing, quickly gathering myself so I could drive home.  Then I started crying again but I was making these weird I’m crying but struggling to breath noises.  I thought, you need to calm down, your little boy will still be up!!  It was hard though.  I got out the car and as I started walking towards the house, I knew things would never be the same.

Results Eve………

27 Jan

It is now 9pm and I have completely worn myself out keeping busy.  Not a good idea, especially as I didn’t sleep too well after eating late (Hubby treated us to an Indian takeaway).

I am apprehensive about what the Doctor will say.  Will I know when I walk in by his posture, tone of voice or facial expression?  We have known each other a long long time me and my GP.  He is and has been a source of frustration for me over the years but at the same time, if and that’s a big if I get bad news, I want it to come from him.  I will also have time to gather myself before I see my Neuro.  If I need to ask questions that come up from tomorrow night, I can prepare, so at my follow up appointment we can cut straight to it rather than wait for me to sob, gather myself only to start sobbing again.  Also, if I get the all clear, I can also be prepared for discharge and hopefully get advice on what the hell I should do about being neurologically challenged without origin.  I will be so so grateful if I am fine, what a relief! But there is a big problem with that isn’t there? That problem, we are all too familiar with – we need an explanation for our feeling so unwell. For me, I do not on any level, want to be ill but I feel exactly that, ill. That is why I need to know the cause. If I’m fine, why don’t I feel fine?
When I got married for the second time, me and my future husband should have been planning for everything typical of a wedding. Us, no, as well as that, we had our plan for me keeping my balance during the ceremony. I was concerned that I would look drunk. We had a miracle though, the weight of my dress actually helped. As soon as I put it on, I felt more grounded, still a bit wobbly but better. As soon as I took it off, there I was banging into door frames as before.
I would love to get my ability of walking through door frames again.
I would love to get full feeling back in my body from the waist down.
I would love to shift this fatigue and return to me.
I would love to be able to walk like I used to without my feet getting more numb, especially in my left foot causing me to limp.
I would love to be able to lift my arms without feeling like they had weights strapped to them.
I could probably go on but it is becoming a bit too woe is me, but what I will end on is
I would love to know why and what is happening to me.
Please please don’t let me be seriously ill, this limboland is a very complex place for ones emotions.

Meltdown or should I say paranoid assumption

26 Jan

Last night, I had a meltdown.  I wasn’t in a bad mood just a bit on one.

It all started with a very polite telephone conversation with a Receptionist at my GP surgery.  I had decided that since it was 8 weeks since my MRI it was time to get some results.  I contacted them just before Christmas and they hadn’t heard from the Neuro, I contacted the Neuro’s secretary and he hadn’t heard from the Radiologist.  Soooo, the conversation went along the lines of, we have a letter here, I won’t read it out as I don’t want to get anything wrong blah blah.  As he hasn’t called you in, it should be fine, lets book an appointment so he can read it through with you.  This we did for Monday evening. I came off the phone and thought great!  But I should have been more positive but I wasn’t.

My GP you see, has labelled me with anxiety for over 20 years since I had an awful virus as a teenager.  They were slow off the mark taking my blood so the results were inconclusive, but he said at the time it was very likely to be Glandular Fever.  I was very ill, bed ridden.  When the fatigue stayed as what we know now as my lifelong companion, my GP has continuously ran a campaign to convince me along with anyone in earshot that I am nuts.  Don’t get me wrong we have a good relationship, he has watched me grow up.  However, 6 years ago when my symptoms went very neurological, he didn’t really know what to say.  He fobbed me off again.  I went away for 3 years and did as he said, I just got on with it.   When I went back, I was assertive, which I find difficult, let the symptoms do the talking and finally after all these years got referred to someone who just may be able to help.

i had the clinical exam, the Neuro stayed very quiet except when he was happy with a particular part of the exam.  I was copied in on the letter to my GP stating his findings.  There were abnormalities.  So, to my horror yesterday the report from the MRI is not for my eyes.  I figured out today that my meltdown was paranoia.  I felt like the Neuro was now in cahoots with my GP.

My history is so long I wouldn’t want to bore people but its my history that came up to haunt me yesterday and it hit me just how much I have been through.  I am shocked that I’m not actually insane!  I will find out on Monday, I just hope my Doctor spares me the I told you so dance (will and grace) xx

Do you remember the time?

24 Jan

When wholenut chocolate bars actually had nuts in them??  He he, yesterday I treated myself to a bar after dropping my son off to school.  I needed a treat.  I just have to do nut check though, I test a few bars to make sure there is a nut in each section.  How sad is that!!

That was the extent of my exciting day, a wholenut.  Oh dear!  That has to change surely!!

Today, the school reopened the back gate which cuts out at least 5 minutes walking time and it is very welcome at the moment!  I didn’t limp today and my feet didn’t get worse, lovely.  Still very cold a few snow flurries but nothing compared to other parts of the country, we are soooo lucky down here.

My body feels quite heavy today so the fatigue is upping its game, so must take it easy whilst doing my jobs around the house.  I worry when I get to this part of the week as I have my Saturday job which is very physical.  My sister contacted me last night to say that me and my son had been invited to her house after school in February as it will be my Neices birthday.  I thought to myself how lovely but then the reality hit, how on earth am I going to walk up there?  I don’t have a car during the day, there is no bus route to her house.  I told her about my feet and legs so I know it wasn’t intentional but I felt quite desperate.  All the family will be there, so once I have hobbled, limped, dragged myself up the impossible hill during the journey, they will all be there to witness the state I will be in.

I still stand by my decision not to tell them of my limbo situation but on occasions like this I am having to cover up what really happens to me day to day.  In the last 3 years I have deteriorated.

I am really trying to keep positive, honestly I am, that mixed with being absolutely petrified.

Frustrations and sadness

23 Jan

Woke up this morning with my left foot feeling more altered than normal and its friend the limp was there too.  I thought great, it’s too early for this nonsense, go away!  It eased a bit and I managed to get my son to school without looking too wonky.

i have been in a strange mood for a week now and it’s getting to me.  I don’t really have anything to feel down about.  Yes I know have results waiting or should I say looming in the background but the Neuro may have good news, you never know!

I suppose its the fact that no matter how many tests I have or what the results turn out to be, nothing will change. Not unless I have something curable. I don’t want my family to turn their back on me because they cannot deal with what is happening to me. I am going to need help and support and something keeps eating away at me that I may struggle to see that from certain quarters.

Agh my left hand is pressing buttons on this keypad but for some reason the keys aren’t coming out right or I am not pressing hard enough even though I feel like I am pressing hard enough!! Ppfftt, I’m going now, I really must find a better place to be at the moment. I must be a joy to be around – not:(
Give my husband a medal xx

Oops – my last post has vanished!!

21 Jan

Oh well technical hitches eh!

My weekend was interesting leg wise.  Work was okay, busy but okay.  We didn’t finish until quite late and I had to go to Argos to pick up a toy for my son.  My car parking ticket only had about 25 minutes left on it so time was very tight.  I had to kind of speed walk/trot there and back and my legs were not happy at all.
When I got home they felt terrible and the fatigue decided to up the game and joined in for a laugh. My arms went all heavy and I felt pathetic, I had only gone to a shop in the centre of town, what am I, 90??
Sunday, pretty much the same. Today, bad. Took my son to school as normal despite the snowfall and this made walking even harder. By the time I got home my legs were heavy, wobbly and my unsteady gait was ridiculous. How I haven’t come to serious harm yet is beyond me.
I just want my results, I need my results. 4 weeks until the Neuro. Hubby is coming with me and him being there will be of great comfort whatever the outcome.

It’s my mums birthday at the weekend. After that it will be time to tell her all what has been going on. Really not looking forward to that.

More frequently now my hands are getting strange feelings in them. Things feel damp and cold. Clothes that I know are dry still feel damp. When I type I’m not convinced that the altered sensation in my feet, legs, abdomen etc. are not starting in my hands, left one especially. Anyone else get that?