All a bit toooo much really...

Hi again,

Since my last post in september I have now been seen by a neuro consultant who arranged for a brain and cervical spine mri. Had those done on 24th Oct and was rather paniced that they called me back the next day to go and have some more -this time a contrast mri. Anyways saw the neuro again last week who confirmed that i have a lot of scaring evident on both the brain scan and also spine one. Currently there are two clusters of new legions both sides of the spinal column and also 15+ (when he was showing me the scans he stopped counting at this point) new legions on the brain. He used the words progressive and recurrent.

I know its crazy as I had a diagnosis of ms 20 years ago but I am once again still finding this hard to accept. He wants me to start taking tegretol (sorry if spelling is wrong) and also wants me to consider daily injections (can’t remember what that one is called). I obviously came home and looked into things a bit and it seems to me that he must think things are gonna get worse to offer the injections (my understanding is that to take the injections you have to go through an ms panel decision???not a clue what that is but I assume the medication is expensive and therefore they don’t give it out all the time??) The clue being the word progressive I guess lol.

Since the confirmation of all this I guess I have been a bit bewildered (crazy I know as deep down I knew this was what it was all along having had an initial diagnosis in 1993). In the past I have put all the pains and aches and legs of lead down to other things that I just needed to get on with. The constant head rushing and tiredness seem worse than ever after seeing him - two days last week i got up in the morning seriously thinking i would collapse on the floor at any moment because my body was just too tired physically to stand up. The pain in my face continues and the neck ache and spasms are getting worse. But I have felt like this many times in the past and just got in with it. I find it frustrating that now I have my confirmation that it seems to be affecting me mentally and physically so much worse (not sure that makes any sense at all…) Maybe I am just in a ‘woe is me’ phase and will soon bounce back with a ‘kick arse’ attitude??

I feel like I need a complete break just to sort myself out I guess but at the same time am still going to work every day because i feel guilty and lazy if i don’t. My employer knows the score and is being flexible in my working hours but even so. My partner is worried and so emotional and I am finding I am constantly offering him reassurances at the moment that I am fine and all is ok - the same with my 13 year old daughter. So I carry on with the normal daily stuff - getting her to school, going to work, doing the shopping on my way home, sorting the house, cooking tea, etc etc etc the things we all do every day and although I feel constantly knackered and just want to come home and rest I don’t feel I can because of them. I don’t want them worrying about me, I don’t want them thinking something is wrong. I worry that the way i deal with things will have a knock on effect on the way they deal with things and so i want everything normal.

I don’t really know the reason for this post, apart from maybe sharing some feelings with those who felt the same. Is it normal to feel so guilty about feeling unwell?? I thought the guilt would go once I had it confirmed exactly what I was dealing with - but it hasn’t. I don’t want to be treated any different, I don’t want anyone close to me to panic if I want to spend the day in bed or not leave the house of just chill in front of the telly and watch crap all day. I don’t want them to think anything about it at all I guess but just accept and move on.

Blah blah blah lol

i apologise to anyone who does read this but kinda feel a tad better having my rant. Thanks :slight_smile:

Eee love! You know there is no need, no need at all for all this guilt!

You`ve got a chronic condition, that needs to be acknowledged and accommodated into your life.

I think you need to find the right moment (when is it ever, but you know what I mean) and sit your hubby and daughter down and have a frank and open discussion with them. If you keep calm and let them see you arent falling to bits or will suddenly be totally dependent on them for everything. Let them ask questions and be as honest as possible.

It is no longer any good in trying to push the problems under the carpet.

The plus side about having this sort of talk is to let them know what is going on. Just tell them how tired you feel and could do with help around the house.

You know, when someone fears something, they can build it up to a point where they are so frightened, they think the worst.

As awful as having MS is, it can be a good life, with the right kind of support and understanding.

As regards work, maybe it is time to think about reducing your hours…when you get on to the new meds, you may become well enough again, to increase the hours back up.

You need to pace yourself and not try to cram too much into your day.

As it is a long time since you were diagnosed, maybe the progression has only recently occured. The new MRI evidence does show a lot of activity, hence why the neuro is advising drugs.

I hope you and your family can deal with all this, but you really must be open and honest with them.

I hope things improve for you hun.

Keep talking to us and well do our best to support you. Were a friendly bunch here.

much love,