@highspirits

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highspirits

Dealing with diagnosis

Hey guys, I hope you're all doing ok. I haven't been on here for a while, perhaps as a way of trying to tell myself the MS wasn't really happening. I was diagnosed over a year ago but am still struggling to deal with the diagnosis, about my future and the unpredictability. I wake up most mornings and think it is all a dream and then I face the reality again that it is all still with me. I don't know whether it is just me struggling to deal with it but I would be grateful to hear how you've managed to come to terms with the diagnosis? Any tip or any help would be great :) Thanks x

Stumbler

@Stumbler

@highspirits , you need to understand the the emotional phases that you'll encounter from diagnosis until you can accept your diagnosis. These phases are :- 1. Shock and Denial 2. Pain and Guilt 3. Anger and Bargaining 4. Depression, reflection, loneliness 5. The upward turn 6. Reconstruction and working through 7. Acceptance and hope It's a bit of a rollercoaster ride and not a direct journey from 1 to 7. You can double-back on yourself. This journey can take up to a year or so!

Tina12345

@Tina12345

Hi, Sorry to hear you've not taken your diagnosis well, as much as it's life changing just live your life the best you can. I felt totally different, after a difficult time not knowing what the hell was going on, thinking I had a trapped nerve in my back to a brain tumor , to hear that I wasn't going mad and had a name to my condition that at least could be monitored and given medication for. I have amazing family and friends who don't treat me any different and I still enjoy things I did before, maybe a little different/slower than before. I have bad days, which are shit and I have good days which I make sure I make the most of. Everyone's different and I'm sure you'll find what's best for you. Take care xxxx

Vicy

@Vicy

I hate to tell you this, but I was diagnosed 20 years ago & still the unpredictability is the most difficult thing to deal with. I bought a dress home with me on Friday to mend a tear for my 5 year old granddaughter & I know I can't see well enough to trust myself with the sewing machine. It does get easier because it all becomes normal, it's just a different normal to the one I had expected or planned. I would say plan for the worst and hope for the best. Our drive way was brickweaved in case there is a need for a wheelchair. There isn't, thank God, but it's there just in case. Things will get better, I promise, but no-one can tell you how long it will take or foresee the future. Everyone struggles to deal with it, if they say otherwise then they're lying. It's a major life change, that can affect all areas of your life. Carry on as best you can & one day it will be just a blasted nuisance, & forgive yourself, we're all much too hard on ourselves. Who is too say what's wrong & what's right, grief is a journey not a place you end up. Good luck, sorry for the ramblings!

potter

@potter

I have been diagnosed for eight years and am only up to number 3 anger. I cried for the first two weeks and then got angry and decided I wasn't going to let this get me down. I will try or do anything to slow this disease down. So far I am alright, I have learned to listens to my body and not let stress bother me. My sister was here visiting for a week, I got worn out driving her around so she could shop. After she left I spent three days on the computer and watching TV, trying to build up some energy. I was out of groceries and clean clothes but I didn't stress about it, I just relaxed and wore dirty clothes ate leftovers. I was a very hyper person and would feel guilty about goofing off for even a hour besides three days. Potter

highspirits

@highspirits

@stumbler @tina12345 @vicy @pott Thank you for sharing this information and your experiences. It makes it easier to know that there are people who can relate to me and your optimism is contagious!

Elisabeth

@Elisabeth

@highspirits Hi there, sorry to hear you're having a tough time coming to terms with diagnosis. I was diagnosed about two months ago (although it feels like years due to the emotional rollercoaster I have been on) I was an absolute mess, so much anger and tears! I didn't understand the disease at all and made the mistake of frantically googling and reading everything which only made it worse. Now I've accepted it and have adopted a more positive outlook on life. I only read certain credible sources now and in all honesty, using this site has certainly helped me and the people on here seem to be wonderful fountains of knowledge! Try not to focus too much on the future (this applies to anyone regardless of whether they have MS or not) as no one can control it. Just enjoy life, do the things you enjoy even if you may not feel like it at the time. I'm lucky that I have a wonderful support system and my friends gave me a kick up the a** to get me to go out even if it's only to the shop but I felt like the old me. Take things one day at a time and maybe even adopt the "ignorance is bliss" approach once in a while. I sometimes do if I just don't want to think about it and I feel focusing on it too much exhausts me. If you need someone to talk to/vent to, feel free to send me a message. I hope you feel better soon x

cameron

@cameron

I'm trying to put into words exactly what gave me hope and stop the destructive 'worry worm' that consumed me. I have realised that I'm not about to wake up one morning paralysed.... that used to be a constant fear. I've searched out good neurophysios and they have been a major help. Having people around you who can pinpoint exactly what the problem is in my frame and give you exercises to address it has changed my mindset. Instead of 'my whole body is useless and getting worse', I began thinking 'my hip is weak and I need to exercise XYZ muscle groups'. Relatedly, having a physio exercise regime gets you to set little goals - how far you can walk, best speed etc. And once you achieve these little successes you can start comparing how you are now to how awful you felt in the early days. And so it goes on..... Another great help has been holidays! I had one of my worst experiences post-diagnosis when I had a city holiday with two friends. They were sympathetic but completely failed to understand my issues. I walked far too much, fell once and came home with what I feared was a relapse. The consultant at the relapse clinic got quite cross with me - it wasn't a relapse, it was severe muscle strain. I was told firmly that I couldn't go on as if there was nothing the matter with me. A month later (in response to this) I went on my first cruise. Magic! Since then, I've had nothing but good experiences with travel and have managed cruises and spa breaks all over the place! As has been said many times you do learn to concentrate on the Possible and make the most of it. xxx

Cheryl118

@Cheryl118

It has been 4 1/2 years since my diagnosis, and I am caught somewhere between denial, anger, and depression. The depression is the worst. I am also very scared. When I was diagnosed I had very minimal disability, so I wasn't always focused on it. But, now, I am having a really hard time walking, along with several other symptoms. I haven't worked in about 7 weeks, since I can barely walk. I have to go back to work. I have no one else to support me. I've worked hard my whole life so that I could have a good life and a comfortable retirement, but now that's all going to be lost. I received my first round of Lemtrada five months ago, and I have only gotten worse, much worse, since then. I'm really trying to stay positive. I am not a quitter. If anyone has any encouraging words, I would love to hear them. I know Lemtrada can take a while to show any benefits, but, as I said, I have only gotten worse.

KoffeeLover

@KoffeeLover

I've been very lucky I think - strange as it may sound, I was actually hoping for a diagnosis of MS because all the alternative diagnoses were horrifically life-shortening and I'm a lone parent, I was so terrified of dying and leaving my kids with no one!!! However, I recognise the feeling of being in a dream and repeatedly being hit in the face with awful reality when my boy was tiny. He was born with a physical disability, it was a very difficult time. I can at least reassure you that it does get better. The stages of grief that @Stumbler mentioned can help you to understand the feelings you are having, it's all part of a process of acceptance. You will even get used to dealing with the unpredictability of your new life!! Take care xxxx

Sandwich

@Sandwich

I hate that 7 stages of loss thing personally. Somehow it just never seemed to match the strength of feeling I had at the time. I still don't rate it. I don't like the word acceptance too. Perhaps I'm stuck in the anger stage! Seriously, it does get better. I went to hell and back and back again with it and was in a dark place for a long time. Looking back I think it took a good 2 years before I started to calm down about it. I'm not exaggerating when I say I didn't sleep through the night for the first year. My anxiety consumed me. I tried all sorts of coping mechanisms with various success, not all of them good. Information helped me. I learnt everything I could about the disease. Getting on a effective DMT massively helped. I did an advanced decision to ensure my views with be respected if there is ever a time where I lack capacity to state them. I paid for counselling, that helped a little. I took up new hobbies and tried to get a better work / life balance. I dabbled in Mindfulness meditation. All these things helped me. In the end I think my anxiety just burned it self out! These days I don't worry. I've done what I can. I've bought a house, changed jobs and basically moved on. The sun rises every day regardless. In the words of Richard Pryor MS has just come to mean "more sh#t" We all have various amounts in our life at any one time. Don't let MS become bigger than it is for you right now.