Monday, 31 March 2008

Proud of myself!

Two things really. I survived moving lots of furniture to the tip and between houses on Saturday which, although I didn't do any real heavy lifting I did do a bit of fetching and carrying and drove a rather large van!!

Secondly on Sunday I cooked a roast! My first ever roast!!! I have cooked roast potatoes before but never the whole thing and the potatoes turned out better than before - just like my Mums! I think the chicken needed turning around and cooking for a bit longer because one side was perfectly cooked but the other wasn't! Never mind, I know for next time!

Also made gravy from the chicken juices, bread sauce from a packet and put some prepared veg in to roast as well. All very good and enjoyed with a glass of white wine!!

I know its not much but I was really chuffed!!

Friday, 28 March 2008

Sex (Mum, you don't want to read this one...)

Sex is a topic that always seems to be talked about anonymously on the MS Society message boards and seems to be something people can be worried about talking about or ashamed. I understand why in most cases but I thought I'd share my experience seeing as it is a fairly common problem for people at some stage or other of their MS.

Originally my problems were isolated to the left side of my torso and my lower legs. Then one morning I woke up and the numb feeling was all the way up to my bum and I was having to check with my hands that I was sat on the loo seat properly, I also felt like I had a permenant 'wedgy' which was really, really annoying!

I realised, having been to the loo that although I could feel the area around my genitals it was not a normal feeling - interesting I thought - but possibly not good. I went to the Dr shortly after this and was referred to a neuro - lucky me, no faffing, no 'its stress' just, go see a neuro.

I'm not sure when my other half and I next had sex but I am a big fan of getting my pleasure in - and I am not that easy to please! Anyway, he had to stop (sore tongue..!) and I couldn't orgasm. I was mortified, couldn't even do it myself. After that I was constantly worrying, did he mind that I couldn't orgasm? Did he mind that I wasn't really interested because I couldn't feel much anyway? I was constantly apologising. He as ever was constantly reminding me that it didn't matter and it would get better or we'd find ways around it. Then I remembered my Rabbit. Now I know some people don't like the Rampant Rabbit idea (trademark Ann Summers....) but when you are a bit numb down there it really works, well for me anyway! Where others failed the rabbit succeeded!

In terms of me not wanting to have sex as much we kind of muddled along, I had gone from dragging him to bed almost nightly for nookie to maybe being up for it once at the weekend. After I was diagnosed we went about two weeks without sex. When I finally pulled myself back together and seduced him into bed we found out that things had obviously affected him as well.

I decided that the afternoons were the best time for me, usually when I got home from work, so I started waiting for him in our bedroom when he got home from work. I'd send him a naughty text when I knew he would be leaving so he'd make sure he came straight home. Still do that now as well! Afternoons during the week and the weekend come to think of it are a great time for us, we're both awake because we've been at work and we get a couple of hours to ourselves, great! I also try and jump on him at the weekends when I am feeling well. It has all been about making the most of feeling well and making time for sex.

Before we would mainly have sex at bedtime, now its anytime we are up for it (within reason obviously!) but still not as often - I think I value the times more often now.

After a couple of months the feeling came back, it has gone briefly since and I don't think it is completely back to normal but we still have a lot of fun and I have a much better appreciation for sex toys!!

General MS stuff - still relapse free, its about a month since I made the declaration and long may it continue!

Anyway, I can't believe I am posting this but if it is of any help to anyone then its worth it, and I really hope my mother hasn't got to this point!

Tuesday, 25 March 2008

Weight Watchers week 4

Don't ask....... Lets just say I had a really really bad week for eating the wrong foods and all you can eat chinese is definately out from now on.......

Other than that I fell over in London and played crazy golf on Saturday, also in London. Can you remember what the weather was like at around 4pm on Saturday? Took me ages to defrost...!!

Tuesday, 18 March 2008

Weight Watchers week 3

Good morning all. Well I weighed in at one pound less last night. Not bad considering I ate out three times. I met a friend for dinner Wednesday and had grilled Seabass and then the weekend was B's Birthday so I took him out for dinner Friday evening and we went out and watched the rugby Saturday and then had a curry.

On Friday night I took B to a new 'Gastro pub' on the Peacock Farm development in Bracknell, called Peacock Farm strangely enough. It serves Badgers beer and the meals we had were very good. You can search for Hall and Woodhouse Pubs via the link above (one day I will find out how to do pretty links). I would thoroughly recommend eating and drinking at Peacock Farm, the food is good pub food and is reasonably priced and the beer is well kept (apparently) and very tasty (from experience!!). Two courses and drinks for two cost around £40. You must remember to book though. It is probably the fact that it is new but if you want lunch or dinner any day of the week you have to book.

I seem to be stable with the MS symptoms at the moment. I occasionally get slight worsening, usually when I am tired (like now) and am feeling like my legs are really struggling to get my body up stairs. Having said that a combination of MS, weight and lack of exercise are probably causing that.......

I have an annual review appointment in June, sent through by the hospital with no prompting from me! I gues my MS Nurse may have had something to do with it but I am so pleased I am under a Neurology Department that seems to get things done. Oh another MS related thing, I had a letter cc'd to me by my Neuro and it seems that my liver enzymes (guessing its them) have risen slightly. I have to have an extra blood test in a month to check on them and I am hoping its just a blip and they stay put or go down again. I know it is a side effect of Rebif and apparently fairly common at that but I am a little concerned because I am getting on well with Rebif and would prefer not to change.

Still we shall see.......

Thursday, 13 March 2008

Carnival Issue #6

Hi all, the 6th issue of the Carnival of MS Bloggers is now out - please click on the link and have a look!

Sunday, 9 March 2008

The end of my annual leave.......

I have been on annual leave this week. My last week of the year as we have an April to March financial and leave year. I have had a nice enough week. I had no big plans. Caught up with a friend from work on Monday and caught up with my Dad on Wednesday. I also did a 4 mile walk in 55 minutes on Wednesday with my Dad and then felt very rough most of the day on Thursday. I think I brought that on myself........

I did some packing up here at my place ready for moving and have been harassing the people involved in the sales of both my and B's place. They are all going to hate me by the end of this!!

So Thursday and Friday were days for vegetating, which I did. The week has just gone so quickly!

I think I am finally at the end of my fourth and longest relapse, 6 months. I have a few bits left over but they will either clear up or they won't. None of them are a big problem. My hands haven't returned to normal nor has my left eye - although its not far off. My legs are the same as they were after the last relapse so I am pretty pleased with that! I am really hoping my Neuro gets back to my Occi Health people sometime soon though, I would really like to get things moving with that.....

So the house moving, that has been interesting. We were advised to put B's place back on the market last weekend which we did and the Sales person rang the chap that had previously been interested. He came round with his sisters in law to have a look around. They put in a low offer on Monday and after a lot of negotiation we got the price to a reasonable level and accepted the offer on Tuesday. We were told that the previous buyer was having trouble getting a mortgage and was probably stringing us along with the booking for surveyors so it was decided a new buyer was the best course. I contacted our vendors on the Wednesday, needless to say she was not happy but thanked me for letting her know as Woodleys hadn't. From the sound of it she gave Woodleys a bit of a roasting about that! Everyone seems to think that it will be possible to exchange by the end of the month so fingers crossed!

Finally the wedding. I have booked the photographer and have contacted the disco so things are moving on. I need to contact a hair dresser but I think that can be done at my leisure. Not sure who to use really, I need someone in Newbury and I have no idea! I will ring the people Newbury Manor have suggested and see what they say.

I have to say there is sooo much going on at the moment, its been soooo nice to have a week to myself. I thought I'd end up with B at home with me this week as he caught my cold and is more inclined to take a couple of days sick to recover than I am! Still he was a brave man and struggled through! Week to myself during the day - bliss!

Saturday, 8 March 2008

MS Awareness, Blogging Friends and a Little Link Love!!

There are at least 137 MS Bloggers out there actively discussing whatever suits their fancy. Below you will find many of these suspects....wait... I mean lovely blogger friends who happen to have multiple sclerosis.

Remember how I mentioned a group project was in the works? Well here it is. As the founder of the Carnival of MS Bloggers, I'd like your help in spreading the word, and in doing so we will strengthen the bonds of our own little Multiple Sclerosis Blogging Web (and share some linkie love with each other). If you are not an MS Blogger, but are a regular reader here, please feel free to help spread the word too.

Here's what you do:

  1. Copy the entirety of this post
  2. Create a new post and paste this content
  3. Visit 3 of the blogs listed below which you were unfamiliar
  4. Leave a comment on their blog encouraging them to participate
  5. Please add Brass and Ivory to your sidebar, if it's not already
New editions of the Carnival of MS Bloggers will be presented bi-weekly at Brass and Ivory. Previous editions will be are archived here and the button below has been revised to include the new link. Please update your sidebar.

Names of the Blogs - Name of Blogger (if known)
and # of posts in 2008 (as of 3/5)

9 Brand New MS Bloggers joined the blogosphere in 2008!!

New! Carole's MS Blog (Carole) 49
New! Great Mastications (Orla) 37
New! Movin' On with MS (Sammie) 26
New! Me, Myself and MS (Emma) 10
New! Being Ammey 8
New! Blogbuster (Daniel) 6
New! Etsy Crest (Shelby) 6
New! Serina's Blog 5
New! I'm Beating MS (Michael) 2

Most Prolific MS Blogger - so far in 2008!!

Jim's Deep Thoughts (Jim) 231

Top 10 Rather Prolific MS Bloggers - so far in 2008!!

A Stellarlife (Diane) 109
Multiple Synchronicities & Sclerosis (Merelyme) 90
Friday's Child 70
My Journey - Living Well with MS (Diana) 69
Sunshine and Moonlight (Kim) 65
The MonSter Ate My Branes! (Natalie) 65
Queen Mediocretia of Suburbia 60
Brass and Ivory (Lisa) 56
Brain Cheese (Linda) 52
Maybe I'm Just Lazy (Julie) 51

28 Moderately Prolific MS Bloggers - so far in 2008!!

Maggsbunny (Maggie) 48
Living with Multiple Sclerosis (TC) 47
MS My Way 43
Bugs, Bikes, Brains (Shauna) 39
Dancing with MS (Lazscott) 37
Trying to Catch My Breath 37
A Florida Journal (SwampAngel) 35
Now We Are Six (Tish) 33
Reality Check (Michael) 32
Access Denied (Herrad) 31
Multiple Sclerosis Blog (Charles of 30
MS Activist (NMSS) 29
Self-injecting Chinese Hamsters since 2007 27
Shirl's the Girl (Shirley) 27
Disabled Not Dead (Anne) 26
Life with MS (Trevis) 26
Living with MS (Blinders Off) 25
White Lightning Axiom - Redux (mdm) 25
Stevers! 23
Word Salads (Have Myelin?) 23
Danieldoo (Vivian) 22
Caregivingly Yours (Patrick) 20
Deo Volente (Lisa N) 20
Down the MS Path (Vicki) 19
Do You Have That in My Size? (Denise) 17
Jenn's Nook (Jenn) 17
Fingolimod and Me (Jeri) 16
Human Life Matters (Mark) 16

51 Mildly Prolific MS Bloggers - so far in 2008!!

A Life of Learning with MS 15
Behind Blue Eyes (Zee) 15
Katy and Mike's Adventure (Katy) 15
Living Life as a Snowflake (Sharon) 15
Mandatory Rest Period (Kim) 15
MS Maze (Mandy) 15
My Journey with MS (Christina) 15
The Multiple Sclerosis Companion (Pat) 15
'Tis Herself (Kell) 15
A Short in the Cord (Joan) 14
Blindbeard's MS Blog 14
Bubbie's Blog (Cathy) 14
One Crazy Chick (Chris) 14
Pat's Pond (Pat) 14
Rants and Musings (Cutter) 14
G and K's Mom 13
MS Toolkit 13
Newly Diagnosed with MS (Andrea) 13
One Life (Stephen) 13
MS Not Just a Diary (Doug) 12
Rayne's World (Jayme) 12
Chaos Personified 11
My MS Journal (Jaime) 11
Purely Patsy (14 yr old Patsy) 11
Victoria Plum - Technician! (Victoria) 11

26 Less Prolific MS Bloggers - so far in 2008!!

Broken Clay (Katja) 10
Mark Pickup (Mark) 10
My Chain Driven Ride through Life in Alaska (Michelle) 10
Deborah Does Navel-Gazing (Deb) 9
Funky Mango's Musings 9
Inside the Mind of a Squirrel 9
Living Well with MS (Michon) 9
No Time for MS (Courtney) 9
Sorting It All Out (Michael) 9
Travels With Lucy (Virginia) 9
MS Caregivers (Prudence) 8
Can You Hear Me Now? (Donna) 7
Irreverence is Justified 7
Multiple Sclerosis Notes 7
My Tysabri Diary (Lauren) 7
Chris Has MS (Chris) 6
Diary of MS X (7 Divas) 5
Electrical Disturbance (Stephan) 5
Know Multiple Sclerosis 5
MS in the OC (Frank) 5
MS News and Notes (Deb) 5
MS Recovery Diet Blog (Ann) 5
The Endomorph (Ruth) 5
The Jaws of My Life (Jaws) 5
Time to Deal with MS (Homer) 5
YodaMamma MS & More 5

38 Barely Prolific MS Bloggers - so far in 2008!!

Some of these folks have multiple blogs or co-blog and are loved none-the-less!! Let's help spread the love and let them know that WE know they are appreciated.

Carolyne's MS Odyssey (Carolyne) 4
Defeating Illness (Chris) 4
Intent, Context, Perception (Chris) 4
Libbi's MS Journey (Libbi) 4
MS Recovery Diet Blog (Judi) 4
My Autoimmune Life 4
The Life & Times of Sancho Knotwise (JM) 4
The Zen Pretzel Trick (Zen Angel) 4
When it's Raining... (Keeley) 4
Kebenaran - The Truth 3
Montana Homecoming (Sister Jane) 3
Ms Quill 3
Reality Chick (Keli) 3
Catch My Disease (Lisle) 2
Clods and Pebbles 2
Dissonance 2
Georgia MS Advocates 2
Lazy Dog Public House 2
Looking Forward with MS (Pamela) 2
Surviving MS in Alaska (Michelle) 2
These Pretzels Are Making Me Thirsty (Trrish) 2
Troy's Multiple Sclerosis Experience 2
You Me and MS (Judi) 2
Camille's MSadventures 1
Comment Column (Virginia) 1
Erik's MS & Lyme Blog 1
Hop Bloody Hop (Philip) 1
Jenn's Journey with MS (Jenn) 1
Living with MS (Cyndee) 1
Mismorphic's World of MS 1
MS Musings 1
MS Real Life Stories & Issues (Kristin) 1
Postcards of My Life (Sherry) 1
Rebooting Times 1
Shoester (Doug) 1
The BS of My MS (Heather) 1
The Perseverant Pincushion (Trish) 1
Tysabri Help (Deej) 1

Having too many items from various posters to count:

LJ Users with Multiple Sclerosis

And finally - 26 MS Bloggers who have been silent in 2008!!

Angst on a Shoestring (Gina)
Dandelion Wine (Lynx)
Doug's MS Journal (Doug)
Imagine Bliss Butterfly (Suzy)
It's Not All in My Head (Optimist)
Just Above the Abyss (Heidi)
Life with MS , seeking a cure (Karyl)
Managing MS with Tai Chi (Joel)
Managing Multiple Sclerosis
Michele's Blog
Mike's Place
MS - My Scene (Virginia)
My Complications (Amanda)
My Demyelination (Tina)
My MS Experience
Object of My Injection (Michelle)
Say It Isn't So (Mouse)
Talk Story with Kimberly
The Great NetXperiment
To Be Continued... (Jaime)
Truth and Beauty (Baraka)
Tryin' to Imagine Bliss (Suzy)
What is MS to Me (Dave)
Willy's MS Rants
Wind Among the Reeds

Hard to categorize:

I Have MS (Tim)
Huggins' MS Pages (James)
MS - A Personal Account
MS Protocols (Jeff)
MSB's Podcast
MSing Around
Multiple Sclerosis Blog and News
Multiple Sclerosis Sucks
OUCH! It's a Disability Thing
Squiffy's House of Fun

Thank you for helping to build a stronger MS Community.

Monday, 3 March 2008

Weight Watchers......

So having said 'I'll start on Monday' just about every Friday this year I have finally decided that a weekly weigh in is the only way forward. I got on the scales and nearly passed out........still its a starting point and I have two big reasons to lose weight - potential mobility problems in the future, stress on the potential, and a wedding, my wedding in fact. Just seem to need someone to stand over me and tell me I have either lost weight or put it on, oh and to pay for the pleasure..........

I will keep you updated on my progress!!

Sunday, 2 March 2008


Following our weekend away where I was deprived of sleep due to the snoring I seem to have developed a cold. I am blaming it on B for keeping me awake but now I appear to have given it to him we are all square!!

It is Mothers Day today and we are supposed to be going to Mums to have dinner but I am a bit worried as Nan is due to have an operation on the 10th March and I don't want to give her anything.......

We will see!

Round up

I’ve been meaning to do this since the beginning of January, write a post which summarises the last year for me. A year that has been so hard yet also so wonderfully good!

It all started in January 2007, the 6th to be precise, when I met B for the first time in person for lunch in a pub. I talked the whole time and I think he only spoke to ask me what I wanted to drink!

So things went from there, we met for dinner and then again for lunch and we carried on. At the end of January I got a strange feeling in my right hand, my little finger and finger next to it were feeling slightly numb. I put this down to having driven a strange vehicle the weekend before. After that the numbness moved to my feet and lower legs and gradually moved on up. To begin with it wasn’t bad. I could feel almost normally, then one morning after a hard couple of shifts I woke up with much less feeling all the way from my feet to my bum and poor balance.

I thought back to two periods of numbness to the left side of my torso which included an episode of a very strange sensation down my spine. I had decided that week that I was not safe doing my job as an ambulance technician and therefore made a Drs appointment. I was thinking referral to an osteopath/chiropractor for my back but no referral to a neurologist.

The wait for an appointment on the NHS was too long so my very kind parents paid for me to get one privately. Around a month later I was sat in a very nice room at the Capio hospital in Reading with a nice lade Neurologist. She did lots and lots of little tests and said that the problem I had developed with my right eye was also related to what was going on. She said that they had to bear in mind Multiple Sclerosis and cancer but that it may be an isolated incident of inflammation and was going to send me for an MRI. To be honest I went away from that appointment unconvinced and still assuming they would find a problem with my back.

I had a quick look at the MS Society website but decided to leave the research until someone told me what my problem actually was.

In the intervening time I had a few different symptoms including optic neuritis and the involvement of my left arm. I then had my MRI on the 16th May 2007. My neuro had kindly rung before hand to let me know that she was in x-ray the next evening so would look up my results and give me a ring. She did and said that there was inflammation on my scan and that she would like to see me on the Monday (21st) around 10am but that her schedule was full so couldn’t say exactly when I would be seen.

So at 10am on Monday the 21st May 2007 I was seen and told that I have MS. I held it together for the majority of the appointment but Mum was there (as she was at all my appointments) so took some of it in as well. Mum had to ring B and tell him because every time I thought about telling him I burst into tears! I went to work for a few hours the next couple of days but in the end I decided that I felt terrible (probably because of the steroids) and I would take the last two days off.

I had an appointment with the MS specialist and had VEP/SEP tests done. I also saw my MS Nurse very quickly and was on DMDs by the middle of August. Looks like West Berkshire does a reasonable job!

Throughout all of this B was there for me. I gave him the opportunity to get out of the relationship on the day I was diagnosed but he said no. He had told me he loved me the month or so before; I had said it back some time after. Having never said I love you to a boyfriend before it was a bit of a scary and unknown quantity! His view was that you never know what is ahead and lets just get on with things!

Since then things got better, I went back to work at the end of July and apart from a bit of tingling in my feet and legs when they got too hot I was back to normal. Unfortunately a month later I started relapsing again. It involved my torso and left eye initially. I had a week off when the optic neuritis was at its worst but other than that I just about managed to work. On the 17th December the relapse took hold of my legs properly and I had a mini-melt down at work before having to go onto light duties again. Over the next couple of days my hands started to go numb and I started getting slight pains in my right hand during the night and when typing. Nothing horrendous.

I am still off the road, although a lot better. I have worked full time throughout and have managed to have a life outside of work, which I haven’t really had since going back on the road.

B and I got engaged on the 5th January 2008 and we are in the process of moving house. He doesn’t seem at all phased by any of what has happened over the last year or so and says he loves me more and more.

So as I said at the beginning of this post, it’s been a horrible year it really has but I wouldn’t go back. I’ll take B and the MS rather than not having either. May sound strange but that’s how I feel!

That's a terrible summary but it would go on forever.......