Hi everyone! This post will appear bizarre so let me explain. The reason I don’t need a reply is that I just want to vent. What is MS? I’ve been feeling unwell for some time. I was first told that I may have MS in 2011. How did I feel? Relieved…yes relieved because I was worried I had a brain tumour. I was immediately started on Gabapentin, Baclofen, and Amitriptyline. Initially it was just soooo much relief from the pain which I always had in my hips. I couldn’t believe that after years of pain I was freed from its chains. It didn’t last long! Things progressed after that. Waking up and not being able to see properly, the tingling in my hands, feet and even my lips! Bloody horrendous. The bouts of Trigeminal Neuralgia, well that just took the biscuit. Having to learn Peristeen, which, I am totally grateful to my neurologist for suggesting it and making it happen. Not always knowing when I need to pee and the endless UTI’s that sent me into hospital because they developed into pyelonephritis. Great! The admissions to hospital (pre Peristeen) for constipation or else acute diarrhoea that left me so weak I could barely make it to the toilet. The blood I was passing was terrifying. I really thought it was game over then.
But no. I lived to fight another day. The steroids that really did help at the time but the come down was bloody shi*e. Sorry, hope I don’t offend. And then 18 months later the “I suspect you have MS” changed to “I’m pretty sure” and then after even more tests, I eventually got " you have MS". I should say that the brain tumour was ruled out very quickly thank God.
So here I now am and where is that? Going through yet another relapse. Yesterday morning I was sewing hems on curtains. I haven’t felt particularly well for the last few weeks. The neuropathy in my feet and legs has been very upsetting bringing me to tears because it was so intense. The difficulty in driving my beloved car has become a nightmare as I can’t cope any longer with the pain of my foot resting on the accelerator. Pain in my ear is always a dead giveaway. I know when that starts that it’s coming and boy it sure did. I just became … Unwell. Needed to sit down and quickly. Could not even keep my eyes open and I was so weak. Into bed for me. And here I still am. When my feet touch the floor it feels like something is putting a corkscrew into the bones in my foot. Ouch! I can hardly keep my eyes open and the look on my little girls face tells me I look ill. She is so frightened and keeps asking if I’m alright. This morning she wanted to know if I would still be here when she came home from school.
By now you’re probably wondering why I’m writing all this. The explanation…simple! I don’t have anyone to talk to. I’ve asked my husband to read a little about MS but, as yet, that hasn’t happened. Don’t get me wrong, he is very good and understanding of these wee bouts of “unwell ness” that happen, but trying to get him to understand that this disease is not a virus and can’t be “cured” by taking antibiotics or going into hospital, well, as they say in Oz “that’s a horse of a different colour.” Heehee! Look even made myself laugh.
Well enough of the feeling sorry for myself. Snuggle up and try and concentrate on a wee movie. Nothing else for it. Just go with the flow until I get enough strength back to kick it in the butt! Hope I’m well enough to put the Christmas tree up for my little girls. Thanks for listening. This little exercise has helped immensely.
I’m not “replying” as such. Just acknowledging the fact that I’ve read it and that i feel with you and that i, too, have a little girl and boy with wondering eyes and a brill but also sometimes “not-up-to-date-with-symptom” husband…
There are no words that can help but I just wanted to give you a big hug. <<<< HUG >>>>
I remember my son telling me at one point that living with me was like living with a very large cat as he always found me curled up asleep somewhere. We both had a laugh at that as we both love cats and I’ve always said I want to be a cat in my next life. Luckily my son was 15 when I was diagnosed and had my biggest relapse. I’ve not been that bad since and at least he was old enough to fend for himself although he was, of course, worried about me.
Back again. Thank you all so much for “not replying” lol. I can’t even express how I feel at the minute. I don’t know you all and yet just by saying what you have has really touched me and I feel your hugs. Thank you xx
Give your little ones special hugs, bring them into bed with you and watch a nice happy Disney film with them. Disney always has happy ever afters and Im sure you and your will too.
I’m not replying either, no, definitely not! But if I was…I’d say hi & whenever you feel the need to have a rant, then this is a great place to do it.
Sometimes those nearest to us haven’t got the right words to help, or frantically flounder about looking for something that will make everything ‘better’ my husband is still trying even after 35years of my training him! Children usually find a way to cope, with lots of help from mum & dad. They’ll grow up with your MS, & understand when you have ‘bad’ times, but those times don’t last forever…there’s sunshine around the corner My two boys grew up with my MS, it was something that was quite normal to them. They’re now 36 & 33yrs. with families of their own & an amazing understanding of my MS & how we all coped together with the not so good times.
Many thanks and hugs right back to you all. Hope you are all feeling better soon and/or if things are good at the minute enjoy and long may it last. You have all really lifted my spirits today and I am so grateful.
It’s easily underestimated how good for the soul it can be just to be honest with others about how we feel, and to simply be heard by them. There’s a bible verse that says true religion is to stand with people in their distress, but that’s tough to do. Too often we want to offer glib advice, instead of simply standing with people, holding them & sharing their pain.
Hi guys hope you are all good today. GP decided,upon “viewing” my little old self (lol), that I needed “the big guns” so I’ve really had to give in and take the dreaded steroids! Last time I was able to “work through” but this morning I could barely lift my head because it was just too heavy for my neck. (Hateful feeling). However, that aside words cannot express what all your replies did to lift my mood yesterday. The one thing I have learned is that this site is full of lovely people and I want you to have my (((hugs)))) of gratitude.
