i have just very recently been diagnosed with PPMS and I’m just trying to get my head FND it all and to be honest I am getting a bit lost in all the information on the leaflets, from he nurses and the hospital and doctors, it’s a bit of overload of waffling information that I can’t get my head around tbh.
Im im here looking for people that understand, I’m a mum a wife, and they are great but because I’ve been I’ll for years before diagnosis the rest of the family think it’s all in the head and everything is going to get better over night. I keep getting asked when are you going to stop using your crutches? Why are you using a wheelchair for going to the shopping centre? It’s really upsetting me.
So far I’ve only told my mum about my diagnosis, still to tell my sister, the rest of the family I’m not that close to and I will really only tell them when I see them which is every couple of weeks at best. And I’m scared of how they will react? I don’t know if I’m being over sensitive, or if this is normal? Anyway looking forward to hearing from you all.
Morning Polly I dont know what happened there I had just typed a bit long reply and everything sort of dissappeard OOPS cant re do it now reply later we are just going shopping …if anyone see’s my reply send it back please it will be the one with a lost face
Hi Polly… and welcome to the gang. You will find us a very supportive group and I hope we will help you come to terms with your diagnosis. Don’t try to understand it all at once. It’s a very complex condition and takes ages to get to understand it.
No you are not being over-sensitive. It’s hell NOT having a diagnosis (dx) because we have all been through the hell of people not believing us!
Hopefully you will find people more sympathetic now you have a dx… but family and friends can then disappear from your life. It’s amazing how a dx of MS can frighten people off! If you are lucky your family and close friends will be sympathetic and supportive.
You can’t possibly guess how they’ll react so you just have to bite the bullet and tell them. Don’t confuse them with information overload… which you’re going through… just tell them the basic facts. Tell them if they want to know more they should look up PPMS on internet.
I dreaded telling my Mum… I’d been unwell for a few years before dx… and when I told her it was PPMS she was relieved as she thought I had Parkinsons or Motor Neuron. So you never know what the reaction will be.
For now, get to know your own MS. Listen to your own body. You will in time be an expert on how your body reacts to MS and what you can and can’t do.
Don’t worry about family and friends reactions. They are grown up people. They will survive. You have enough to cope with without worrying about them… and they don’t sound as if they’ve been supportive at all so if I were you I wouldn’t worry about them.
Concentrate on coming to terms with it yourself. Best advice ever is to take it one day at a time. Your MS will be different every day so just deal with what symptoms you have today… and remember that stress makes symptoms worse (ie worrying about your extended family…of course you need to try and help your husband and children to understand).
Take care and look forward to getting to know you,
Welcome to our “gang” lovely people here who all help one another, giving advice where we can, but listening as well as understanding.
First thing I would suggest is take one day at a time, listen to your body, and do what it is saying, if its telling you to rest, that’s what you do. I tried to ignore it and work through it, but it does not work that way.
Also don’t be too hard on yourself, in fact, be kind to yourself, as you will have different emotions, bit like a bereavement, but it will get easier give yourself time.
I wouldn’t worry what others are thinking about your DX, I just concentrate on yourself, they will deal with it in their own time.
Hope to see you on the forum, and don’t forget…one day at a time.
Thank you all so much, I’ve had such a slow day, think it’s a knock on from the last few days of overload. I can only say all of your advice is fabulous and I look forward to getting to know you all, and Pam was totally right when she said it’s like a bereavement, I feel like I’ve lost , how do I describe it? …like I’ve just been told see that road, path you thought your life was going to go down welllllllll your not, that nice car you thought you’d be driving your kids in well I’ve just told you I don’t want you to drive. Things like that.
Sorry if I sound low I’m not I’m just shocked still. I’ve just got to make adjustments to my life and my directions.
and pacing, oh please if anyone can give me a lesson in this please do, would appreciate it.
Have you been referred to an OT? If not you can refer yourself by ringing social services adult team, or your gp can refer you. They will come to your home and advise about things that can help you to make your life easier.
Also, have you been referred to an ms nurse? If not, again ask your gp to refer you, they have loads of information in aspects of ms.
As for pacing yourself, that comes with listening to your body, easier said than done, but well worth doing.
Hi Pam, I’ve got an OT and a physio who come to the house everyn2-4 weeks so I’m really lucky the house has lots of adaptions they were trying to put in stair lift but I’m trying to fight it at the mo. I’m wanting to keep my mobility as long as poss.
my OT is great as is the physio, but the MS nurse ive only seen at hospital, I’ve got a number and an appointment for the end of September.
Welcome to our little gang. I felt very alone with my MS before I found this group of fantastic people. I hope you will get as much from being on here as I do.
Pat and Pam have given you the best advise. It is a very hard thing to come to terms with but you’ll get there in the end, we all do somehow, that isn’t to say you won’t always have rotten down days sometimes but you will recognise it and get to learn that it doesn’t last forever and it will go away eventually.
It could be considered too early after dx but you mentioned being down…a lot of on us here use antidepressants and they really do help. Depression in MS can be caused by various things…the simple fact that you have MS is enough but theres also the fact that it can be caused by lesions so it’s well worth checking with your GP.
You asked for tips on pacing youself…its a hard one. I have had MS for over 40 years and sometimes still struggle with pacing myself. Be kind to yourself and rest when your body or brain need too Remember also that if you push yourself to much in the long run it just makes matters worse.
Dont forget, we are all here if you want to shout, or cry ( we all do,that from time to time) or to ask a question or simpy tell us what going on in your life.
I think it’s all been said: don’t try to get your head round everything at once, listen to your bones, do the physio to keep up your core strength, recognise when you need to rest and do just that. Enjoy what you have in your life and stay positive. Come on here for comfort and support when you find any of this hard.
Welcome Polly, it’s all been said, and very well too. You may feeL like your living and breathing MS for some time. To come, know one can tell you how to cope better with it you will deal with it your way. The forum is a great place as you can see to sound off, get support and knowledge from those who have been round the block and back. Family can be a pain in the a**e it can take them some time to accept mum and wife cannot be the eternal giver all the time, they never stop trying! Extended family I’ve not seen for months, I realise now I can’t drive as far as i used to and not visited them that it was me doing all the running around.
Regarding the stair lift I refused to, but I am now suffering from secondary pains as I pull myself up using my arms my neck & shoulders are hurting real bad, on reflection it may be a good idea and find safer and more enjoyable ways to retain fitness.
Thank you all so much, your warm welcome has helped a lot, I was a bit scared of joining lol!
I didn’t sleep last night only managed to get sleep between 1and 3.30 am I’ve had all the mumbled and jumbled questions and thoughts and fears going round in my head for a few days. My kids have been away this last week, so my husband and I are going to be telling them about things tomorrow after we have all had a night sleep.
theres fabulous info about telling kids about MS especially the PPMS, but the important thing is they have been living with me being ill for quite some time so it’s more just adjusting to the label and the future.
ive been on an anti depressant for the last few months and I also had a radical hysterectomy last November due to ovarian cancer, but I’m cancer free now, the anti depressant has been a life saver. I was a mess before it tbh.
Thank you all so much, I really look forward to getting to know you all.
Polly, I think we can all relate to the mumble jumble of thoughts going through our heads!
I have found Mindfulness Meditation very useful. You don’t need to sit cross-legged and start eating lentils! Promise!
There’s loads on the internet about it, but basically to get you started, when you get all those thoughts whizzing round, bring your attention to your breathing.
Don’t try to change your breathing, just concentrate on it… choose one spot, maybe your tummy rising and falling or the air going into your nostrils or mouth.
Thoughts will come and invade your concentration… the mind being like a naughty monkey always racing around… but as soon as you become aware that your mind has gone off somewhere, gently let go of the thought and bring your attention back to your breathing.
You can also try and relax the body on every ‘out’ breath.
As I said, loads more on the internet but it actually doesn’t get more complicated than what I’ve described above, and you will notice it gets easier with time.
You can do it any time of day… don’t have to sit or lie down or anything… there’s no right or wrong way to do it… but I find it really helps with that thing that I call ‘buzzy brain’.
Btw…I too was terrified before I did my first post…read stuff for a couple of years before I plucked up the courage to write anything…now I would feel as though someone had chopped off my arms without my virtual friends!
Polly I do the mindfulness breathing too and it helps the busy buzzy brain enormously. I often lay for hours and hours in the past without being able to sleep in the days before I started this. Pat has given you great advice.
Dont spend too much time worrying about coming to terms with it. I don’t think anyone comes to terms with it we just cope the best way we can.
Six years on I still get my "I wish I could days’. I often get angry about how I took my mobility for granted.
Just last night I was sad over a simple thing like getting off the sofa to pick up my new grandson when he was crying, I had to wait till someone else picked him up then give him to me.
At least I can still hold him.
Maybe you should have the stair lift as it is not giving in, it’s adapting.
i still use stairs but it takes a lot out of me and I feel it’s energy I could use for more productive things.
It’s early days for you yet but you will learn to live with it. It certainly isn’t the life I would have chosen but you find ways to cope.
i can honestly say most of the time I am happy and contented.
Sorry for the ramble but I have had a busy weekend and am really tired today.
Thank you, yeah I found there was even ones on you tube that I liked and I can put on my ipad and lie down because I’m really struggling with spams type things, and they stop me relaxing, but when I put in my ear buds I’m away… But I’m still learning.
I’m playing about with my homepage thing so my newly diagnosed with MS doesn’t keep coming up under my name, unless i need to keep it there? Also is it okay to have a proper photo on as my id?
My kids aren’t tiny or anything but we are telling them about things tomo, they are my son 17 who’s going to Uni in September and my little un who’s only just turned 12 who is a total star, she takes the greates care in being my “wing girl” we are 2 peas in a pod, the hardest thing for her will be the fact that I haven’t really driven much at all and only really when I’ve had a really really good day, but when I have we have done something together always. I have been told to hand my licence over, I think she will take this hardest, cos it was a mum and holly thing. My son is learning so we will get rid of my powerful car and get him something small and hope he passes soon.
its funny how it’s the silly things y worry about. Guess part of it’s just being a parent, the other part is just adjusting.
I appreciate its a worrying time telling your kids, but the only thing that has changed is, you have a name for it, a label if you like. They have already seen you poorly, instead of “it” it now has a name, but you are still the same person as you were before. I am sure thinking like that will help them.
Wishing you all the best, looking forward to seeing you on the forum. Don’t forget, take one day at a time.
Hi Polly and welcome. I was dx a year ago and can still remember feeling like you do so clearly. The guidance you’ve been given is what I was given too, these people are wonderful. The forum has been a life saver for me. I’ve just got a question if you don’t mind? Did your Neuro or gp tell you you couldn’t drive or did you get told by DVLA? I’m only asking as we all have to go onto a 3 yearly renewable license, and I thought they’d stop mine due to my meds but as long as your doctor’s think you’re fit, you can drive with PPMS, if you’re unsure or believe you are capable then contact your Neuro, and lodge an appeal against DVLA’s decision. It’s an individual thing and no two sufferers are the same.
You mention that you’re worried about your children. My daughter was 14 when I was dx and as there’s only the two of us, I was really worried about her but my OT referred her for counselling and they were fantastic. She still worries and tries to bully me a bit but we both agree that that was one of the best referrals, she’s a different child!
If your ms nurse knows of or runs any courses for newly diagnosed patients, I’d definitely recommend you go. Mine has just run one and it was really good, I learnt so much. Just remember that you have ms but it doesn’t own you. You can’t fight your symptoms as the others have explained, but you can still enjoy a reasonably full life, just at a different pace and with a few tweaks. And there’s always someone here with answers or suggestions to those questions that keep creeping up. Take care.