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In denial

Hello everyone, Still in denial that I have MS, keep attributing new and existing symptoms as other possible causes, which is driving my husband and employers crazy, as I refuse to slow down and accept what has happened. My question is, why can’t I just accept my diagnosis - has anyone else been here before? Here is my story. 42 years old previously in good health. Diagnosis - January 2011 CIS - May 2011 RRMS given by an MS specialist Investigations - January 2011 abnormal brain scan (a number of lesions in the periventricular white matter and one in the brainstem) - February 2011 abnormal spinal cord scan (lesion in the thoracic region) - April 2011 positive lumbar puncture for oligoclonal bands - Other conditions ruled out, such as Lupus, sarcoidosis, Lymes disease Symptoms - June 2010 pins & needles in my tongue and top lip, this continued until August - October 2010 pins & needles in my right leg with spasms ( this only lasted a few hours but left me with residual weakness). - The same symptoms occurred again in December, but this time I started tripping over things that weren’t there, also the pins and needles in my tongue returned. - January 2011 right sided facial droop, sought medical advice and given urgent neurology appointment - February 2011 arms and legs became very heavy, difficulty with speech, facial droop, loss use of right leg (this only lasted for 3 days). - May 2011 slurred speech I’ve had numerous episodes of slurred speech and stiffness and pain in my right leg & hip, but more recently I’ve had burning in my arms and legs, with notable weakness in my arms (struggling to hold a hair dryer), pins & needles in my fingers. Treatment - IV steroids (had severe reaction resulting in A&E admission). Had abnormal LFTs, still not sure why - Copaxone (another A&E admittance due to allergic reaction, only 12 days in. - waiting for decision to start Tysabri I’m seeing my neurologist tomorrow because of the new symptoms and will have another MRI scan.

Sorry posted before signing off. Many thanks Theresa

Hi Theresa,

I floated down de Nile for many years so I know of what I speak. Accept or don’t accept your diagnosis it will make not one whit of difference to the progress or otherwise of your MS.

Accepting that you have it can help you to plan and make decisions but in the end we all cope in our own ways. I just feel that you are expending a lot of energy trying to fight the enevitable.

Jane

Hi Jane, Thank you for your reply, my doctor suggested counselling as she is keen that I get the right support and doesnt think this will happen until I accept my diagnosis. I must admit I do expend a great deal of energy looking for other causes…I don’t know what makes me think I know more than my MS specialist. He has been brilliant and is incredibly supportive and gives me all the time I need. Theresa

Hi Theresa. I think plenty of us have been there before - denial is a common first stage of grief, and so it’s nor surprising we might experience this as we grieve our previous non-ill life. How our denial looks moght be different though. For me it wasn’t thinking my symptoms were down to other causes. I didn’t have many symtoms for a long while. The way I denied it was by burying my head in the sand - I didn’t want to think about it or talk about it. I was given lots of information about it, but I couldn’t read it - I shoved it to the back of the cupboard; I didn’t want to think about what might happen to me.

For what it’s worth, I think the denial stage can be very valuable - it helps buy us time until we’re more ready, emotional and psychologically, to be able to begin processing what’s happening to us. But the fact that you’ve made this post suggests you’re beginning to move on. There are a few other common stages of grief that you might find you go through before coming to a place of real acceptance - anger, bargaining (“why me?!”), depression… So if you find yourself going through any of those experiences, it’s perfectly normal and doesn’t mean anything’s wrong with you.

I don’t know if you can force yourself to speed up the grieving process, but it’s good to try & not get stuck in any stage you might find yourself in. Talking to others, counselling or journalling may help. Or coming on here of course.

Hope that helps.

Dan

Hi Theresa, Just wanted to lend you some support, Dan and Jane have given you great advice and there is not much to add except that we all understand the denial stage and have probably all experienced it to one degree or other. However, as Jane said it will help you to move forward with your life if you acknowledge it. You have accepted it really as you say that you know the MS specialist knows more than you. Accepting it does not mean your life is over, there are still plenty of wonderful experiences out there that you will have. You don’t have to give up on them. Just tailor your life to fit in with what your body is going through. Keep positive but try to move on, Teresa xx

Hi Dan, Thank you for your very thoughtful reply, I have been through the anger phase of the denial process and have cried lots, mostly through frustration of not being able to do the things I used to do and my perception that my career was over. Initially, I sought advice from many sources and looked into treatments & other therapies, but then my stubborn streak came in and I started to think, what if the specialist has got it wrong, irrational I know, but I haven’t been able to move on since & refusing help when offered. However, you are right that by posting on here, I’ve come to the realisation that I am indeed moving towards acceptance of my new challenge and perhaps this forum, from those who understand and give each other comfort, words of wisdom, practical advice and every so often a few laughs, is a start in helping with this transition. Theresa

Hi Teresa, Thank you for your supportive reply, it’s a little daunting moving on from what I know and I am doing my best to stay positive, I think it’s the progression in my symptoms that’s made me stop and think about how this is affecting my life and family and that its about time I start seeking support in moving on. Like you say, its tailoring my life to suit, just not sure how to do this yet. I guess it’s one day at a time, because this gradual acceptance in quite overwhelming. Theresa

[quote=“Taz69”] Hi Teresa, Thank you for your supportive reply, it’s a little daunting moving on from what I know and I am doing my best to stay positive, I think it’s the progression in my symptoms that’s made me stop and think about how this is affecting my life and family and that its about time I start seeking support in moving on. Like you say, its tailoring my life to suit, just not sure how to do this yet. I guess it’s one day at a time, because this gradual acceptance in quite overwhelming. Theresa [/quote] Hi again Theresa, You will come to terms with your new life and I think you have already started that journey. It’s not the life you thought it would be or perhaps what you had planned but with the support of your family and friends you will be fine. Let people help you when you need help, be kind to yourself. Know that we are always here to listen or be ranted at, we don’t mind! Take care, Teresa xx

Hello from me too.

There are some really good replies here. You want to carry on as before but seem to realise your symptoms wont let you.

How about using that fighting spirit to work out what bits of your previous lifestyle are the most valuable to you,and working out ways of adapting other areas of life so you have to energy for the things you want most.

If its that activity itself, then are there ways you can adapt that to make it possible…many people on here have great fun adapting everyday tasks so it works for them…there are some contraptions in my greenhouse that blue peter would be proud of but it means I feel safer from falls in there.

Involving family in the lifestyle changes may mean they feel able to help you at last and may well of been something they wanted to do but didnt want to upset you.

I wish you well on your journey and here is an excellent place to let off steam…or share your funnies.

Take care Pip

Hi Pip, I echo your comments, in that, there have been some good replies and they have been gratefully received. It has been reassuring learning that life beyond MS can be positive, I do understand that it’s finding and learning new ways of living with the symptoms and adapting life to suit and yes, my family and work colleagues all want to help, I’m just struggling to let them in through fear of losing control. This week has hopefully been a turning point. Theresa

Good on ya onwards and upwards.

Pip

You say you have m.s. - so where’s the denial?

[quote=“stenovski”]

You say you have m.s. - so where’s the denial?

[/quote] Yes, I do say I have MS because this is what I have been told, but it’s accepting the diagnosis, moving on and adapting my life that I’m having difficulty with, but a progression in symptoms has made me revise this and seek advice & support from this forum and of course my neurologist. Theresa

It’s the hope. We can say all sorts of things but our hearts might habour something else. For years I “knew” that I had MS and yet I waited for someone to tell me that it had all been a ghastly mistake. In the main part I kept this hope secret because I knew that my family would think I was crazy but I couldn’t shake off that little feeling. I’m SP and mostly in a wheelchair now so I can honestly say that my little hope has well and truly gone but hey - life is still good so I’m not grumbling.

I try to just make room, accommodate and accept it into my life but NOT let it control my life, the rest of me is bigger and stronger than what “it” is, that’s how I look at it all.

A whole vocabulary has developed around m.s. – denial, acceptance, grief/grieving process, processing, anger, bargaining, come to terms with etc.

Do these terms really mean anything, do they help?

I wouldn’t have said that terms like that have developed around MS. I think it’s more that they’ve come out of people’s experiences in any & every walk of life or, as in the case of the stages of grief, an academic’s observations of people who’ve experienced a bereavement. Whether or not they’re helpful will depend on each individual. I guess it can be a bit like personality profile models, like Myers Briggs. Some people don’t like being labelled or feeling like they’re boxed in by a definition. But then others can find it very helpful to have something that mirrors back to them they’re own experiences, or helps to explain how they feel or react.

Personally I found it helpful when I came across the stages of grief and, looking back, explained a lot of what I went through (and still do go through). It’s not a perfect model by any means - not everyone will experience the stages, or go through them in the same order. But it somehow helps give me peace of mind. For example, I’m not normally an angry person. So if I notice that I’m getting angry with my wife or friends, then it can be easy to think there’s something wrong with me. But since hearing about the stages, it means I know I’m not a bad person for getting angry - it’s inevitable that having MS is going to cause some strong emotional feelings. So it also helps me to be more gracious to myself, and also to other people.

Dan