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Feeling vunrable, scared and confused

Hi all! Ive finally made it on here! Im new to all of this. I was diagnosed with ms Nov 2014. An illness i had heard of briefly but never had to pay attention to. Im normally a happy go lucky person. Always boucing back from lifes problems, and ive endured alot! But this illness is destroying me mentally at present. I am a single mother of 2, dont really have anybody, and am scared to dealth im giving up. I resently had an eptopic pregnancy. To top everything off. Which caused a relapse(i think). I managed to convience a&e to prescribe me methypred, as they wanted to keep me in on the drip. But i had nobody to mind my children. I dont even know what im saying right now, apologise! I just felt like talking somewhere, where i maybe heard

Tish take a deep breath and breathe out slowly there does that feel better give yourself time to adjust. Gosh that sounds patronising, it isn’t meant that way.

Speak to your GP tell him you are finding it hard to come to terms with and are worrying about your children he might prescribe something to help you over this difficult time he may even suggest counselling both of these will help you and both of these have been used by loads of people here and elsewhere so don’t think its a backward step, if anything it’s a forward step to your wellbeing. I would also speak to your MS Nurse about any groups close by you could join so you can chat to others in the same position as yourself. A word of warning though you may find yourself faced with people who have MS at its evil best and it might frighten you even more.

Im not very good at giving helpful advice sorry, someone else will be along soon though you are never alone on here.

Jan x

Hi Tish,

I too am newly diagnosed it is s**t. You have had so much to deal with having also had an ectopic pregnancy and being a single mum of two.

However you say you’ve bounced back from other bad things so your a survivor and you can do this. How old are your children?

Do you have an MS nurse because if you do I think you should phone them, if not phone your Consultant secretary and ask for a referral to one. I’ve phoned mine a couple of times to chat about things that are happening to me.

Your GP is also an option maybe some antidepressants would help in the short term.

Also with the steroids I unfortunately can’t have any treatments at the moment as my MS looks like Progressive not RRMS. My MS nurse told me that if that changes I can have them as an outpatient, come in daily for them and go home afterwards.

Sorry I can’t help much but there will be someone here who will, I have received fantastic support from this forum.

Take care and as someone here said to me be kind to yourself

Snowqueen x

Thank you Jan! Breathing would help! I seem to just be in a constant flap. Not knowing which way to turn. Not feeling in control. And realising now, that it will take a slow, steady journey in order to regain that control. Alot of reserch, Awareness, questions and relaxation. And your great at advice! Every little helps. My neurologist warned me about the groups also, for the same reasons. May i ask if you have Ms? I dont want to say “Suffering” you may not be

Stupid me! I replied to your message Jan, but i sent it as post rather than a reply. I’ll get the hang of it. I’ll try and retrive it

hi tish

sorry to hear that you have joined our club.

but we are not victims, we are survivors.

mindset is the key. refuse to be a victim!

now give yourself time to come to terms with it all.

as snowqueen said, be kind to yourself.

prioritise what needs to be done each day.

in your shoes i’d spend quality time with the kids and the chores can go hike.

have you been offered any dmd (disease modifying treatment) ?

if you have to go out, plaster a smile on your face and go out like a warrior.

treat yourself to an afternoon of snuggles with your children.

deep breathing is brilliant for restoring calm. blow out the breath for longer than you inhale.

in 2, 3 out 2, 3, 4, 5

if you need an anti-depressant don’t refuse it because this is scary sh*t and you probably need something to prop you up.

keep coming on here to let us know how you are doing, ask any questions.

we’ve all been where you are but life moves on and we survive.

sending you waves of psychic strength

carole xx

Hi tish, I had brain freeze for at least 6 months after being diagnosed. Couldn’t talk about it without bursting into tears, then things settled and you start adjusting and things look better. All above advice splendid, just take it easy and prioritise.

had young kids when diagnosed, I was honest with them, and they accept your limitations. I’m still mum and can still hug them, and tell them off! Be gentle with yourself and don’t give up xx

Pleasure to meet you snowqueen! My children are 9 &11. Both healthy(thankfully), energetic boys. They do keep me going. And also wear me out! I do have an ms nurse. Not quite sure when and when not to contact her…? All apart of the learning curve i guess. I have to laugh!!! Relapsing last week id come to realise that i had asked my neurologist one of the most important questions… what do i do if i feel as though im in remission…? Im feeling so many niggling pains, aches, blurred vision etc… what actually is remission…? Ive never been a big supporter of medicines, unless Absolutely necessary. Taking steroids have been helpful but a very big step for me So im hoping to pursue this journey on a non medical route. I have ordered the Terry wahl book…1 of my clients is not only a homeopath(that has kindly taken on my case), but also lives with ms…So i think im on the right roads. But even though im armed for life change, this is bloody hard! May i ask what your experiences have been so far?

Hi Tish yes I have MS, got my first symptoms in my early thirties, it didn’t really affect my day to day life till a massive relapse five years ago. I am now 55 and had to stop working last April. I have had a number of relapses I worked through and a few I had to take sick leave for but all in all my progression has been slow.

I didn’t join my local MS group till I retired last year, my first instinct was to run, overall I’m glad I stayed. I am a rational pragmatic person and I realise I may never get as bad as some of the people who attend obviously are. I don’t worry about anything till it’s actually happening but for someone who does worry it might not be a good idea.

Keep visiting the Forum I have learnt more about MS in the ten months since I joined than I learned in the 22 years since I showed signs of MS.

Jan x

Hi Tish,

​Pleasure to chat to you too. I would say with the MS Nurses that they expect to hear from us more at the beginning as we work out what this means for us, especially as we are all individual in our presentations. I have only contacted mine twice but that’s in a month.

Glad your boys are school aged do they know? At least you can have some quiet time when they are at school… Maybe? I don’t have children myself but have a 3yr old niece and 18mth nephew who I am close to. Was sad to hear that when my niece found out I’m “poorly” my sister found she had put a photo frame of me and her together under her pillow, that made me cry. Just shows little ears tune into things.

My experiences have been positive from a point of view of diagnosis. I first saw my Neurologist 11th Feb, MRI Brain & C Spine 16th, MS diagnosis 11th March at which point I was referred for Neuro Physio and met my MS Nurse, LP 27th March, LP result 2nd April. All very fast really.

From a symptom point of view started with Fatiguable foot drop initially just after long walks now a daily occurrence when I walk my dog need to use a walking stick when it happens. Balance off, Fatigue bad since end February, constipation and urinary hesitancy. Numb tingling hands by end of day, had 2 temporary episodes of blurred vision which appeared heat related, have muscular neck pain, get shakes on exertion,

I am a nurse full time and up until my LP had not been off sick for years, tried really hard to keep going but am now signed off sick as I just needed some head space. Being happy and positive in the face of this is exhausting as you know.

I did go to my local MS Treatment centre the day after diagnosis and asked them what was on offer. On my first visit it freaked me out how badly most of the centre users were affected by their MS. I wanted to run but didn’t, since then I have been having weekly Aromatherapy Massages to help by neck & back ache. I have also stayed and socialised with other centre users and talking to people who get it has helped me.

Snowqueen x

Thank you for your words Carole! Your message brought tears to my eyes. Myself and children, the open road and cuddles. All that matters. I was born a warrior so why would i loose that survivng spirit now?!! I was offered dmd by a very impatient neurologist, that made me feel as though I had no choice. Lucky i have a regular (rather goodlooking) neurologist that reminded me i do. At this moment in time i plan on making slow life changes whilst reserching all possibilities. x

Hi slug Brain freeze. me to a T right now! I have told my children in a round about way. But Sitting down with them is definetely on the cards. Being gentle with myself is so hard to do! But not being gentle with myself has most probably helped me on this very journey! Thank you slug.x

Hi Trish,sorry you feel like this, might i suggest the ‘Mindfullness for health’ book and cd, by Vidyamala Burch(amazon) i am halfway through the course and am finding it helps such a lot with my stress and anxiety,its a very good way to learn how to relax, something i have never been any good at,

It helps people with any injury or chronic illness cope much better.

J x

Hi Tish and welcome.

I’m ppms so don’t know a lot about rrms but having relapses sounds horrible. It must be difficult when you have young children.

I’m 59 and diagnosed 2 years this August. This forum has been a great support…hope we can support you.

I have Reiki and Reflexology once a month and that really helps with the relaxation and being able to switch off for an hour.

Take care xx

hi again tish

find your nearest ms therapy centre - usually just outside cities.

same as ms society groups, you can see ms at its worst but you can see these people smiling, laughing and carrying on as normal although with mobility aids.

i go to trafford park ms therapy centre, just outside manchester.

i have HBOT there (hyper barric oxygen therapy).

i sit in a decompression tank with 6 other people.

we have to wear a (kinky-looking) mask!

it takes 15 minutes to get to the right pressure, then 60 mins at that pressure, 15 mins to get back to normal pressure.

so if you decide to try it, take a good book or you’ll be bored enough to lose the will to live!

90 mins of undisturbed reading time - bliss!

there are loads of other therapies too.

even a neuro physio which is great because seeing the nhs physio takes ages for an appointment.

it’s great for meeting other people with ms and i have made some good friendships.

you can ask them about their experiences with dmd’s which may help make up your mind.

you are sounding more positive already

carole x