Forgetting How To Remember…

After the whole scan results thing, I am finding it so hard to find myself again. Before that day I was in a good place, for the first time in my life I was positive and it was just about me, not the disease, but now thats changed. Again.

I hate the way I can’t seem to find that person again.

Why?

I have done everything I was asked. I go every month and make the small talk. I listen to the statistics, risks and constant questions. I do it, I embraced it. But still, nothings changed.

Not really.

I might be that much happier, but my head is just as mixed up as ever.

Or apparently more so.

Because now I forget. I forget the name, the answer or the question I was asking in the first place. I was looking through some old photos today, it was so nice to see memories. Pictures tell a story, you tend to snap something you want to remember forever. But I see photos and I don’t remember the story. I don’t remember how I was feeling at the time or why I even took the photo in the first place.

It’s just not there. 

I see baby smiles from Pops, but I don’t remember the feeling of becoming her Mum. Becoming a Mum for the first time. I don’t remember how that felt.

I don’t remember the early months.

I used to have one of those memories that took in everything. The stupid things people would never think to remember. Now I don’t even recall the reason I wanted to save that memory.

I want to feel strong and determined, positive and powerful again. But I don’t.

And I don’t know how to get it back again….

Almost There

So today was the day of my MRI, a day I was not looking forward to.

My last MRI was the day before Christmas, last year. The hospital had lost my original referral, so my lovely ophthalmologist got my a very quick appointment at a private MRI suite. I didn’t really expect there to be much difference between private and NHS, I know this sounds stupid but I couldn’t see how they could really differ.

Boy was I wrong. The first time I was walking into the unknown at 32 weeks pregnant, this time I knew what was coming and I was petrified of doing it all again. I assumed I would be given headphones with music, but I wasn’t, I also assumed I would get a comfy pillow for my head, nope, didn’t get this either. The only thing I got this time was to have my sister in with me during the scan. She held my legs so I knew she was there, was lovely not to feel so alone.

This time I had to have dye, I though this would be a simple injection, but no. No this would be through a cannula, not an issue for most, but if you read my blog you will know I have horrendous veins. Therefore most of my appointment time was taken up trying to find a vein. Its not the needle or pain that bothers me, its the poking about under the skin, trying to catch that vein, ergh makes my stomach turn.

After getting a purple arm and lots of pumping later they finally found a vein. Phew.

When the cage was placed on my head and I was passed into the tunnel (the very narrow tunnel) all the feelings of worry came back. The feelings of being alone. The realisation that I was in that machine because I have a neurological condition, I have brain problems. Its on of those things you never thought would happen to you. It has happened to me.

Having my sister the squeezing made me relax, gave me the confidence to see it through.

Now I continue my MS journey in limbo land until I get to see my neurologist.

My legs have been feeling weird recently, no biggie, just hope it isn’t the start of another attack. I have been carrying on and putting it to one side. After all, ignorance is bliss.

And So, It Begins!

So recently it has been pretty quiet on the appointment front, partly due to me cancelling. Now I am letting them flood in again and vow to attend them all.

A week today is my next MRI scan. I am unsure of how I really feel about it. Part of me is scared, its loud, lonely and uncomfortable. Part of me is anxious, as I really want the results, but what will they be? Will they show enough change to warrant having daily meds? I sure feel alot different. If it does show change then I start a new chapter and a whole new load of side effects. If it doesn’t show the changes then I am stuck in the unknown, waiting for  another attack.

I have been waiting for this day for ages, it was left so long due to the steroids I had. Enough time needed to pass for the steroids not to mask the new activity. Now its so close I am wanting it less and less. 

The incontinence nurse is coming friday, i’m not incontinent just yet, but she will be scanning my bladder to see how she can help me and my stupid brain.

I got my disabled badge for the car today. I waited ages but it has come at last. This will make trips out much easier on me. 

Hubby and I are getting on alot better. Still have a few issues. I can’t help but feel uneasy sometimes, compared even. I am not the active person I once was, I don’t look the same and I cannot do the things I used to do. I am petrified he will leave me for someone else. Can’t be easy being married to someone like me. 

Well that’s my update, all comments welcome, thank you for reading, this is what keeps me going. Well this and my girls. 

Monday afternoons

Well after my amazingly amazing blog this morning I wasn’t going to blog again today, but after the afternoon I have had I want to, whilst it is fresh in my mind, or I will forget all these crazy emotions.


Yes I am afraid this post will be a downer. Who doesn’t like a bit of drama? Me that’s who.


Those of you who read my blog, you will know I have MS, those who don’t, well now you do, but more importantly, where have you been?! Anyway, this afternoon my MS nurse Jane came over. She is my new MS nurse as I live in a werid place across to county borders, so my care is shared between both, mostly at Gloucester Royal, but she is easier for me to see as she is based in my town and can come to my house. We did the whole talk as she didnt know too much about me as they don’t share alot of info across the border! I am used to talking about it all so it was not an issue for me. We talked about all my symptoms, things I didnt even think of, for example my bladder, it is not the greatest and as of late my bowls have been slow, she informed me it was very likely both of these things were related to my MS and my brain giving muddled signals. Whilst mid conversation I forgot what I was going to say, she said that was also a massive symptom. Although I knew all this I has never put two and two together. Anyone with MS will know the worst and hardest symptom to deal with, fatigue, with it only starting to rear its head again today I feel horrid. It was only last night I was saying to Cal how I had much more energy, I think I jinxed myself. Jane told me I looked exhausted and she really had not expected me to look and seem so tired. 


We discussed everything and I mean everything. It was almost like a counselling session, which was good as she understands. I kept crying which I hadn’t done for a while. I explained the more I seem to fight the worse it gets, she said it was common and I was to try and not fight so much, but at the same time not let it take hold. She suggested the middle ground of managing it the best I can. This is easier said than done. I know a few people see me as lazy, but if they spent a day in my shoes they would see that is not the case, I literally cannot physically go on. Jane suggested I start to take naps, which is possible but just another way I am having to adapt. 


She had been talking with my new neurologist, Mr Warner. He has said I will be starting treatment come September, its just finding the right one. Jane talked briefly about how they work and a few different examples, she mentioned a monthly one which would be given as a day case through IV once a month. I hope this one is not the one I will need. I see enough of the hospital, I don’t need more reasons to go.


She also said how some people need MRI’s once a year sometimes more, this pisses me off as I hate them. I was also informed that if they see no new brain activity on the scan I will have to wait until I have another attack. This frightens me now I know how they feel, although I do not know when they are going to hit me.


All of the info just re-enforced how random and unpredictable MS can be. No-one knows what is next, or when something will next happen. I hate this. It makes me want to run away and hide.


As much as I was glad to talk to her, all this new and old information made me remember I have a neurological condition, the steroids have given me a rest, so to speak but now its coming back at me like a massive bus with bus rage! 


Who knows what tomorrow will bring. No-one and this sucks.  

Good = Bad?!

Now this past year has been one of THE worst years of my life. Oddly enough it has also been one of the best? Me and hubby were talking and simply could not figure it out? I mean How can it be good and bad?

There was the birth off Beboo:
There was getting our new lovely house. Our fab little doggy, Pops starting play school, although I miss her LOADS when she goes. Hubby having a job he loves. Getting debts sorted so we can at last start again. See these were all good. But then there is the great big stark contrast of the bad. Me being diagnosed with MS, having all the test etc, loosing almost all the sight in my left eye, having extreme left sided weakness, becoming so dependant on others. I really do feel for hubby. Our lives have literally been turned upside down. Somehow we are all still together and still a family. Yes we have our off days but who doesn’t?!


I cant help but wonder what the future will bring, how will the rest of the really odd year go? I scares the crap out of me. The people who get me and hubs through are family and close friends, and now our online friends. 


I am hoping life will ease up a little. I just do not really see it happening. Why do I think this? Well for starters when we arrived home today there were four whole appointment letters for me, yes FOUR! Including an MRI (see there is one above) now these buggers look lovely and amazing but it as to be one of THE most scary experiences of my life, the noise is unreal. I no they are now a part of my, well, routine? Even so I know this will determine what daily injections would suit me best. Until doing some reading up I saw this as a quick fix, but even the meds come with some side effects, more lovely things to become accustomed too. Lovely.


Well I guess the whole good/bad thing will forever keep us ll guessing. I just hope I make it to next year a stronger person.