Hello fellow MS sufferers. I hope everyone is happy.
Thought I best post, now my mind is calming. I’ll visit my GP next week. It’s been long overdue.
Got an acute case of depression. Very sensitive to light at the moment too.
Started on a new batch of Baclofen & going to stick at it. Regular as clockwork. Set my phone to remind me & a system in place so my jumbled up mind can’t fail. It’s taken me a long time, to accept I have MS & life hasn’t been simple on my own. Support & Social Services are doing a great job, now I’m finally coming to terms. A good contact has MS, which is making things a lot easier to sink in.
Here’s to a new chapter. I plan to feed the birds & watch the monkeys on TV until my MS community group starts. When I see the Neurologist in 2 months, hopefully things will be easier to sink in. I’m a bit simple & creative. Being around others with MS could snap me back to life. It’s all been overwhelming.
You sound very brave, and very sensible - seeking help with things. Accepting MS is tough, such an up and down roller coaster ride. I do hope that you are entering an easier phase now.
Feeding birds is such a worthwhile, relaxing thing to do!
I wish you the very best! Spring is on the way too.
I just had to write back i’m still in Limbo land but identify with the depression , hit a real low recently and I’m still battling with the deep knot ache, helpless feeling that often lurks in the pit of your stomach …but its the little things that mean such a lot smelling the air feeding the birds watching the monkeys ect, we get the good positive endorphins [not sure how to spell that] My dog helps me, he make me laugh and cuddling up to him makes me feel better… and not forgetting good friends they are so valuable. We are still gonna get some bad days but its good to celebrate the little things in life that make us smile.
Thanks folks, good luck with your knots Shell. I know what you mean. The thought of getting a dog has crossed my mind many times, but until I can get active, I feel, I’m being unfair. Dogs have way more energy than me at the moment. Cats are cool, but the Birds are vulnerable.
As for spring, it’s always been my favourite season. Daffodils are a great sign. Yellow is a great colour. So too is the Blue Bells in the woods. The fresh Green of new creation. Colour after the dark nights & Grey days.
Health wise. I’m getting lots of discharge from my eyes & hearings some strange frequencies. Walking is becoming quite painful. It’s like walking on gravel bare foot. Resting, used to sort me out. Now when I wake, I have to be ready for what’s next. Insane head aches, dizziness, tremors, cramps & zero energy. Telling myself to get up & do things is frustrating when I struggle. I try & start to cry. That’s when it gets messy. Luckily I always stock up on plenty of tissue. The discharge seems endless. I try not to get upset around people. My own torment, isn’t something to be around. When I start stuttering, that means I’m holding back. The stuttering seems to be triggered by frustration. When I’m centred & at peace. I see things in a hole new light. I would dance if it wasn’t so painful & dizzy. I should of been in a wheelchair long ago, but I keep saying to myself. Use it, or lose it. I don’t think that works, but it keeps me going. The joints are creaking. I told my Neurologist, it feels like I’m a bag of gravel. I sometimes think my lungs have forgot how to breath & putting my chin on my chest is causing pain in my spine. My ankles throb with pain. My legs feel so weak. Fatigue knocks me out. I’ll tell myself to get busy, push myself & shortly after I’m off to the land of nod. I’m so stubborn, I just keep fighting it. Trying to think of ways to achieve things. That’s when the depression kicks in. I tell it where to go. It makes me laugh. I see a smiley face & just plough on. I’m not a religious person, but something keeps me going. Peace, unity, LOVE & having fun. It’s not all problems.
Take care out there fellows. No pain, no gain. OUCH!
You describe things vey well. I was on my own for about 14 years with MS. There is a lot I can identify with. In my case any approach towards depression has been treated quite brutally. This is where good friends help distinguish realities and possibilities from what I may start assuming or thinking.
Assumption & thinking to much is all I seem to do. I’ve been alone for many, many years. Tormenting myself, with all the extra baggage on top. Friends have been a distant memory. Life isn’t simple. Throw in a, unknown disease & it gets a lot more jumbled. A good friend just left. Without individuals who genuinely care. It’s no fun at all. The clever, always seem right pushing & the other harmless souls just make things worse with pulling. I’m trying to find out where I am. How to move forward & contribute. I try to joke, because if I didn’t, I would just become highly emotional & upset. We know what gets done then. When I hear of the disabled & frail targeted by thugs. I see a bright red. Panic button time. Everywhere I go now, I get strange looks. People trying to figure out, what’s wrong with me. Even I don’t know. I’m no GP. It changes like the weather. Asking how I am, can change in 5 minuets. I just wobble along. Trying to get to where my mind tells me. God forbid it be anything exciting. Something I used to live for. All this watching & listening going on doesn’t help. Gossip is assumption. Whispers in private places, should be whispers. Someone saying they caught a 7 foot trout, shouldn’t be directed to the angling times. Ranting isn’t always truth. Targeting social media to sell news isn’t right. There are problems.
My best wishes to you Steve. Keep plodding. A cure will be found.
Oh Puddle. i feel so sad for you, i don’t always know the right words or right advise but my heart goes out to you…Dont feel ashamed to ask for emotional support, most of us are or have been on anti depressants, I see a counsellor for CBT and there are still days when i feel real despair, but i’m lucky and have a husband and children so to be all alone must be so dreadful.
The dog has really helped me, he is an assistance dog from Canine Partners, he’s been a great help ,i’m sure a dog isn’t for everyone,… at Canine Partners they assess you and very carefully match the right dog to the right person. Good friends are very important, but you know what they say if you can count them on one hand you are really fortunate. I really hope you get some help… This forum is very good, people on here are very kind and many will be able to relate to you.
Hi Puddle, your post describes exactly where I’m at and probably everyone else on here, and has made me cry, well done for your recent positivity when everything about this illness seems to affect our very being, everyday is an unseen battle we carry on silently to those around us. I had few friends before my diagnosis due to my fatigue, now I have just 1 who pops in and out of my life.The people on here have helped me more than they will ever know.
I have just enrolled myself on a 12 week local college course 3hrs a week,something to focus on & hopefully make some friends, the one major part of this illness I struggle with is the sense of loss of the person I was.
I’ve read a few biographies by MS sufferers through the kindle store looking for inspiration mainly for what has helped them to find the path of enjoyment in life & overcome the pre- occupation of this horrid MS, to be honest I know I could have a terminal illness etc, things could be a lot worst,I should count my lucky stars, but I can’t I hate what has happened to me.
Hi Pauline, thanks for the good advice & tips. I can sense it’s genuine. I’m happy by myself at the moment. At least until things settle. I have always had lots of hobbies & interests. I’ll be moving forward soon & meeting more people with MS. I’m about to attempt something I’ve been dreading. If I fall again. The wheelchair is going to become a trusty tool for good. I even have a modern twist idea for that.
I’ve read quite a few upsetting storeys on this forum, where people express how MS affects their lives. What I never expected is to feel I’m sent packing, if I say something others don’t agree with. I have good & bad days. We all do. I thought we are all different. Where else is there to go? This forum is the best place.
The symptoms of MS are never ending. That lovely meal, heads straight for the loo. That feeling of excitement, sets off a relapse. The turn of weather conditions, makes fun stop. It’s endless. Yet we have to stay positive.
My trick, is to fool myself with smiley faces. Good folk are awarded a smiley sticker. Silly, but it works for me. Pure positivity.
As you may have noticed from other posts the feelings of depression and / or stress are very common after diagnosis whether or not you’ve been suspecting it. Those feelings don’t just go away when you feel you’ve accepted that you have the illness unfortunately. You’ve been very brave and done the positive thing by realising that you’re feeling down and sought help, well done, that’s one of the hardest things to do.
Your attitude is very good, considering your hobbies and looking at what you can do rather than focusing only on what you can’t. PPMS is progressive as we all know but it doesn’t mean that every symptom you have will stay with you all the time and get progressively worse. We all have periods where parts of us seem a lot worse but then may improve again. My abilities definitely vary from week to week.
The people on this forum are lovely, very supportive and experienced. They helped me a lot getting over my initial fears and I know that if I have any questions or just need cheering up there’s always someone here. Even by relying to posts you feel you’ve done a little bit to make someone smile, feel less alone or reassure them and they appreciate it.
Life is not over because you have ms, it’s just taking a different course to the one you thought you’d have. Keep your chin up, you’re not on your own and make sure you do something every day that you enjoy. Also let people help you, they’re not pitying you, they’re doing it because they want to.
Take care and don’t give up the hobbies, if needed find easier ways to continue with them. Sorry about the essay.
Thanks for the words of encouragement Cath. You’re a star.
I know what you mean & I thank you for your support. What isn’t easy is dealing with all the extra things on top. Others help. I get that & I’m very thankful. To say thanks but no thanks is good sometimes too. We are all individuals, with very complicated issues. Losing both parents & a lot of other things isn’t always considered. I’ll get the help I need, when it sinks in. Some have their own hidden agenda. I just want a bit of peace to figure out how to take each step.
Like you say. The problems do ease. A glimpse of being happy is there & then bump. I’m personally fighting not to be in a wheelchair. Wheelchairs are not a problem at all. Yet if others knew what I did, they would understand. When I figure out how to adjust, it will be an eye opener.
The people on this forum are awesome. We all just need to reach our individual potential. I have a lot to give to this community. Should I wait until I’m ready, or get pushed? My choice is to wait a while. See my GP. Get on the right medication & help platform. Then really make progress. Hopefully inspire others, if they choose. Anyone for white water kayaking or off road electric scooter treks, camping trips, treasure hunts, tree planting or lot’s more needs?
First things first. My goals are different. We all believe in different good things.
Thanks for the positivity Cath & all who suffer. My best wishes to all.
We are all different. I change my mind often. In wheelchair at times then trying to walk holding on to husband. Walk a little way and then want just to lie down so change mind yet again and back to wheelchair I go. So hard to mentally accept that I have lost physical ability but my sense of humour magnified times 100. Live life as best you can, find your own way of coping. But be aware there will be times it doesn’t work but it will next time!
Puddle I sit at the back room window with my camera watching the birds. We get lots of ring neck parakeets and they are so funny fighting and being silly. I did put a clip on YouTube of two Margate birds fighting. It amuses me thinking people will go there expecting pictures of two women fighting, as I said I am easily amused. The best tablets I take each day are my antidepressants without them I get very morose. And I recommend laughter it confuses people and the look on their faces is priceless.
Here is a virtual hug from a dull and damp Margate.
