Last reply 2 months ago
The Good & The Bad

This is day 3 of a good day now again a twing but good. But this past week i will have a chunk of good days and then a really bad days for the rest of the week. So am unease on what going to happen this week. I have this week and next to rest and then back to work finally. But am scared because i don’t want anyone to see in that state again friends and family. Do you get sick of the unpredictable-ness of it all? i just want to reduce the risks and at the moment i do reduce the risks but it isn’t enough. I just want my predictable mess of a life back again. Stop people from worrying even my home town is watching and giving me that look…
I want more good days so i can show people that i am okay and that i am taking care of myself. They say my face is saying something and i told them i don’t have a mirror to see what my face pulling haha I will admit i will get discomfort but its nothing compare to the big attacks that last a few days.

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stumbler
2 months ago

@sarah_graham , you need to try and learn moderation, so that your highs are not quite so high and your lows are not so low.

MS is unpredictable, but we have to try and live with it, rather than battle against it.

And, try not to concern yourself about what other people think. It doesn’t matter what you do, people will always think what they like.


dramaqueen
2 months ago

You are putting too much pressure on yourself. It sounds like you are surrounded by people that love you. We are all scared of the future but don’t worry about what might never happen. Take one day at a time. Speak about treatment options with your MS nurse you at least have options now. Back in the day they had no treatment. Be kind it’s horrible to try hiding how you feel. Speak and share your fears. Think of how you would feel if someone close to you was feeling how you are and sharing their fears.I wish i could click my fingers. lol x


sarah_graham
2 months ago

@stumbler I know but i want people to see me as the bubbly and active Sarah that will not let anything get her down. But i can see it in their eyes they just want to protect and then i see the people that don’t know are worried and scared when they saw me lose my legs and crying in pain. I just want people to look at me as Sarah not MS Sarah


sarah_graham
2 months ago

@dramaqueen Thank you for offering to click your finger to make it better haha When you say its true. In fact my mam said to me awhile ago when the mangers ask me permission to tell supervisors about my ms so their be more eyes on me and if am having a bad day they know why. cause one manger thought i was begin lazy and after begin told he came to me in tears and apologies. Bless him, he has such a good heart and one of his friends had ms too. Maybe i should but am not ready for that yet to tell everyone yet. One day at time telling people and good days & bad days with my ms. Its just this is my longest relapse and i have had one in 2 years.


potter
2 months ago

Worry about what is going to happen is stressing you out. Stress can cause exacerbations and set your progress back. I would feel really good one day and would try to get everything I needed to accomplish done. The next day I would be down and out, I over did it. I finally learned that I couldn’t work at the speed of light anymore. Potter


stumbler
2 months ago

@sarah_graham , you are still the bubbly and active Sarah. Perhaps, not quite as bubbly and active, but everyone needs to slowdown at some stage.

You are not MS Sarah, you are Sarah, with MS. Everyone will get used to this additional facet of you, as your bubbliness shines through. Let the MS become like a tattoo on your bum – everyone knows it’s there, but it’s just a small part of you that you keep to yourself.

Everything just takes time. So, be patient with yourself and be patient with everyone else


grandma
2 months ago

@sarah_graham 20 yrs ago when I was still doing everything I remember turning to the family one day and saying “which one of us is disabled?” They had got so used to mum doing everything, shopping, school runs etc I did virtually everything normally and I pointed out that we wouldn’t have the big vehicle for delivering hay to the horse, towing the caravan etc., if I didn’t have a mobility car, things have got slowly worse and really gone downbank in the last 18 months but I am still ME! If even your home town is ‘giving you that look’ when you have to, tell people, believe me a little bit of help goes a long way and if it means you can get on with the normal things in life without using as much energy that’s great. The more people that know, the more you can explain, you’re not that scary person and you may often look drunk, but in fact you’re not, having been mistaken for it on a regular basis, but have had ‘someone in the know’ step in a get quite cross and say “she’s not drunk, she’s got ms you t…t” no longer embarrassing, take every bit of help that’s willingly offered.๐Ÿ˜œ๐Ÿคž


dramaqueen
2 months ago

Sarah i dont mean tell everyone but you cannot put on a front to those you love. My parents died before i was diagnosed but my sister and close friend helped me through. I cried for the loss of control . I hated to appear worse still do even though i’m 54 now . But others only really want the best for you. Once your relapse pass things will feel better. Please dont stress about what we cannot change. All will be well soon.


sarah_graham
2 months ago

@dramaqueen Am sorry to hear about your parents. sending my blessings. I stress that i can’t keep my love ones safe from this. I know they worry but they wont tell what bothering them. Wish they just tell me and not hid it from me.


sarah_graham
2 months ago

@potter That is true. I just want more good days and no more bad days. I know my new limits now and one day i will go back to my old ways of doing everything.


sarah_graham
2 months ago

@stumbler Thank you. You are such a good egg ๐Ÿ™‚


sarah_graham
2 months ago

@grandma Yay even one in my home town is starting to know what i have. In my home town i keep myself to myself but, i do see it properly for the best that they know. -touch wood – if something happens like you said they what to do and they know were i live and everyone knows my parents and family. So maybe its a good thing after all that everyone knows
Thank you grandma


melmel1
2 months ago

@sarah_graham I know exactly how you feel the last 3 months I’ve felt crap then one good day then a bad day and your just thinking where are moreeee of the good dayss lol keep strong u sound a tough cookie xxx


sarah_graham
2 months ago

@melmel1 I feel better now that am not the only one. Are you okay? 3 moths is a long time bless you. You are tough cookies as well : ) Yesterday i had a good but i went down hill towards the end of the day. However i got the photo-shoot down for my photography assignments so woop woop


vixen
2 months ago

Hi @sarah_graham, as others have said, things will start to โ€˜normliseโ€™ a bit more. Things seem still seem to be unfolding for you at the moment I wish someone could have explained how patient Iโ€™d need to be with myself when diagnosed 2 years ago. Iโ€™m hardly in top of it even now, but have developed the ability to let each day com and go as it will, and feel OK about it. True, this condition is a bastard, but at least we can all support one another and know what it feels like….x


melmel1
2 months ago

@sarah_graham I’m waiting for results of a second MRI a eye evoked test and have to do a lumber puncture, it’s the waiting for me that’s the killer,I’m glad you got your photo shoot done, the course sounds very interesting x


sarah_graham
2 months ago

Hi @vixen yay am so glad that we have this site so we can talk to each other. Reminds ourselves we are not alone. I have had my second day at work and it was good. am so happy that am back at work. I didn’t want to leave work cause it didn’t hurt me much today. but I know I need to heal. got results of my MIR and they found flare on my right side of my spine. So I be starting treatment going back to hospital on the 25th to discuss a bit more about the treatments. then going to do another MIR scan on my brain so this will be my 4th MIR on my brain. To see if there are any new lesions and this new scan will a new base line for them. So they can keep an eye on it xx


sarah_graham
2 months ago

Hi @melmel1 How were your results? Hope you are okay. I really do love it. Just ordered a new computer this one is getting slow and she (the laptop) over heats xx


melmel1
2 months ago

@sarah_graham hello darling no results yet nhs very slow lol I’ll give them a call soon still need to do the lumber puncture, glad to see thiรฑgs are lifting up for you how’s work going ect X


sarah_graham
2 months ago

@melmel1 haha bless you hun. Give them and see what is going on. Work is good, today is day2 of work and I didn’t want to go home. I love my job and they take good care of me. I have finished edits of a christening job so am leaving photo assessment last. Lucky with home course I can do it at my own pass. I got results from MIR I have a flare on the right side of my spine. So be starting treatment at some point and we discussing about the treatment on the 25th. Then another MIR scan on my brain see if there any changers from my last 3 MIRs from 2 years ago. This 4 MIR on my brain will be the base line while am going through treatment. So am happy and good then I have to think about what sort of treatment to take as well. How are things at work end? apart from the NHS haha xx


melmel1
2 months ago

@sarah_graham what treatment are you going to choose? Its great when u kove your job and get on with people and makes u almost forget about the ms lol yes im dreading the lumber puncture was a disster last time lol have u ever been on treatment or is this the first time? Ive been easing into work after been dizzy for so long last 8 days ita like a miracle diziness calmed down and vision more clearer hope it stays this way lol x


sarah_graham
2 months ago

@melmel1 I haven’t read about it yet but am think am going to have the injection. So I will have that 3 times a week and that for life. And I will have to do the injections myself. Plus if I want to have a baby I will less issues with this form of treatment. I would love to be a mam one day and that what I really want a baby. And this form of treatment they have had it now for 25 years so they know the ins and outs.
That’s sounds awful hun. Have you told your MS doctor? Is there anything they can give you just to ease it? like you said you can see much better now and touch wood it stays that way xx


melmel1
2 months ago

@sarah_graham yes that sounds good that theve been around for 25 years have u got any hokidays planned? Im booked in for a xray guided lumber puncture so there buggers cn see where there goin this time lol x


sarah_graham
2 months ago

@melmel1 No I haven’t booked any plans. I was going to go to Scotland towards winter and see the Northern lights. So those plans are up in the air at the moments cause cold affect my legs so i have to keep that in mind. I might do the Scotland thing next year. What about you? aww please hun i just hope they get you sorted xx


melmel1
2 months ago

@sarah_graham my friend goes scotland said it’s beautiful, I prefer warmer places but am cautious of hot destinations now cause of the heat and ms, yes they better sort me all this has been dragging on since last year x


sarah_graham
2 months ago

@melmel1 same my friend goes to Scotland once a year especially in the highlands. It’s a pain that both of us are affected by temperatures you hot weather and me cold weather. But I do want to go but this year am taking it easier. However am doing the race for life for my friend hen do bless her she wanted to do something for cancer then am doing a colour run for cancer with my other friend. So I think I have done my limit after that haha . I haven’t been abroad I don’t have a passport. Just keep pushing them at the end of the day it’s your health xx


melmel1
2 months ago

@sarah_graham aww u gt plenty of time to see world , thats lovely doin the race for life, yes ive learnt not to over do it anymore take it much more easier x


sarah_graham
2 months ago

@melmel1 oh yes plenty of time but I want to live it my way. But I have to listen to my body and to reduce my risk of making it worst. It’s been hard for me am a very active person and I worked on one of hardest dep at my job. Which I love but with the new dep am on they promise it is hard and there plenty to do like my previous dep. So I won’t be bord and I will never stand still. When I stand still I start hurting and legs go stiff. Where you a active person too? Xx


melmel1
2 months ago

@sarah_graham I know why u mean I used to be very active in the gym 2 hours a day work ect walking everywhere, and then last year i started knowticing after workouts I would be twitching loads as I was overdoing it.x


sarah_graham
2 months ago

@melmel1 it just heart breaking that you know you can do it but at the moment you can’t. I know one day I can do it and the same applies to you too. But It will take time am giving myself a break for a year. But I want to start working out again cause my body shape is going down haha I only I have 1 abe pack left haha use to be a 4 pack abe girl ๐Ÿ’ช xx


melmel1
2 months ago

@sarah_graham it is frustrating its like I wanna push myself and sweat like i used to but know nt to push tht hard at mo, haha u made me laugh im tryin to watch diet and do sme exercise put on so much weight since last yr feel like a beast lol


sarah_graham
2 months ago

@melmel1 I know what you mean you go to self “ya sweat it out it doesn’t that much” haha now you are like right it’s getting tender let’s cool down and stop. Lol it’s best to laugh isn’t it ๐Ÿ˜‚ No your not a beast with weight thing., you the beast fighting MS take this MS down with rawr and a claw attack haha xx


melmel1
2 months ago

@sarah_graham ๐Ÿคฃ๐Ÿคฃ I neded a laugh x


sarah_graham
2 months ago

Hey @melmel1 if you ever need a laugh give me a shout out haha ๐Ÿ˜‚๐Ÿ˜‚ xx


melmel1
2 months ago

@sarah_graham thank u ๐Ÿ˜˜

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