i told about my other private journal a few entries back. the one i keep for those days i can't cope,and need to get it off my chest. well, i realised there was something missing. my friends comments. so, this is to set the record straight. once and for all. my MS, and how bad it sometimes really is.if you want to leave now, i will understand ok? back to normal next time. this is just me explaining to my friends.
i first got symptoms over 8 years ago, tingling in my hands,like when you are stung by nettles. at first i wasn't worried, then one day i tried to put a picture up,i couldnt hit the picture hook nail,kept missing. so i went to dr.M, at first he thought i had a trapped nerve, in the end i was sent to neurologist, and i have told what happened in earlier entries. so,last year,on december 21st i was diagnosed with MS. i have told you how my ankles swell, and the pain i get. well today was the worse i have EVER been in my life. pain in my legs nearly sent me mad. and spasticity is really bad in them. i cant keep them still. i'm still a carer though,so after mum had eaten breakfast i washed floors in kitchen and bathroom,and decided to clean lounge up a bit. not a lot. just tidy and dust. now my desk was full of junk, so i thought, nice easy job, sit on chair and clean up. and then i realised something.
i have had forms, and papers about different benefits i may be able to get. someone was supposed to be getting in touch with me to talk to me about helping me fill them in. i have never heard from them. but neither have i done anything about it. there were letters from the MS society. disability rights, council. loads of papers. and i realised something. i have been hiding them. in full view, but covered over with other stuff, under books. letter from linda my MS nurse. asking me to make an appointment. i never did. form for blue badge never filled in. and i got thinking. i came to the conclusion i have had a tiny, just a little, hardly noticeable breakdown. anything to do with the MS or being disabled has been ignored. oh, yes i talk about how my ankle is on here, how i got chest infection. but the important stuff, the forms, the appointments, those are swept under the carpet. and i think i know why. i dont want to be disabled. i hate being unable to cope. to not be able to walk over the marshes. so,if i ignore it maybe it will go away. except its not going to. and today i really have had to accept the truth, i have MS, and i cant pretend any more. i hate it. i hate waking every morning,in pain,knowing it will get worse as the day goes on. i hate not being active, even with my bad back i was able to walk ok, now every step hurts. and i cried. a lot. i think poor mum has been expecting it. anyway, after i had had a good wail, i sorted all the papers out. monday i am ringing linda,make an appointment to see her. perhaps i can keep on steroids, they did help. also going to ring up about help with filling in forms. think its about time.
so. if you was to ask me how i am right now? i would say,oh ok thanks, ankle bad,but doing ok. i always do. but i am not doing ok. not really. but i am still that carer. so i have to be ok.and who knows,maybe the next time you ask me maybe i really will feel a lot better. you think?? take care all
17 comments:
I'm so sad for you Mort. I wish there were some magic treatment or some magic words that would make you feel better and all your pain and frustration would just go away. Accepting is the first step and it sounds like you are taking it. Yell as loud as you can that you need help and accept any help that is offered. I will continue to pray for you (and for you mum). {{{{{Big Hugs}}}}} to you Mort.
Joyce
I am glad that you have been able to put into words for us just how you feel Mort. Thank you. I have been what the world calls disabled I suppose from birth but was abel to work etc and never for a minute thought of myself as "disabled" then when I had to stop work at only 28 and a year or so later use a wheelchair ...occasionaly....I kicked long and hard at the diabled tag...me? not me.. soon.. be better was my thought as well. That was a long long time ago well over 30 + years !!! how could I have live like this for 30+ years...I really don't know...I suppose the years have passed one day at a time...But for sure I never expected to be here now!!!! Mind you I have decided I am NOT DISABLED it is the world around me that is DISABLED...I am quite able to get on a bus, go for a walk, go out for a meal without having to negotiate steps...so it is the steps, the gates, they stiles that make me and many other folks unable to get around....does that make any sense ..maybe not... Anyway we just put on the smile and get on with it Mort. Live for today...if we can ! LoveSybil xx
(((((((((((((((((((((big hugs Mort)))))))))))))))))) I feel your pain. I think you have been in denial as I was first when I was told I was diabetic and then when told I had breast cancer. I did not want either, I wanted to be the same as I always was, I did not want to be this way. But, in the end, you come to accept that you cannot change it. If only we could. I have learned that however hard I have cried, it has changed nothing, however much I have ranted and shouted, it has changed nothing. Acceptance is the hardest thing of all but it does come, truly it does. Now, you go forward, fill out your forms, get all the help that you can, you are entitled to it. Do not put it off, it will occupy your mind and there will be help at the end of it. Remember, you can always rant to us.
http://journals.aol.co.uk/jeanno43/JeannettesJottings/
Oh Mort, your entry early this morning made me cry. There are things i want to tell you and so i will email you later on today. (((( Big Hug )))))
Speaky soon - Big Luv, Jaynee X
Dear Mort Iam so pleased you have at last shared this with us your friends ,and dont forget ,there is an organisation called D.I.A.L (in the phone book ),who can help with forms and advise on what is available ,much love to youy both Jan xxxx
It is wonderful to share the good and positive, it takes real courage to share the negative downside. The whole is the sum of the parts and we love the whole you. Glad you are able to realize that you need to get on with all the stuff and will seek help. Do it. Sometimes you have to just speak up and be recognized to get things accomplished so don't give up there can be help for your pain. Bless you, Dannelle
Yes, my dear Mort, Time to share, even though I KNEW YOU WERE NOT TELLING ALL. I know how it is and have known, I think since I met you. I lived all you are talking about with Alan, the tingling and thinking it was a piched nerve. Mort, never ever be hesitant to tell me how you feel IF YOU FEEL LIKE TELLING ME. I had a melt down last night but that is done now. I am a better person for having seen what I saw Alan go through. That is why I had to take some of my entrys off. It was not the ral me coming out. I let depression take over but not any more. Part of that is because I am so proud of you for being honest and taking me back to the strength I had for Alan. Lucy
Dear Mort ~ isn't it odd how when we are asked "Are you OK" we immediately say "Yes I am fine" ~ When we know we are not ~ I am so glad you have told us how you really feel facing up to the fact you have MS and you are entitled to a lot of help and I do hope everyone rally's round and gives you all the help you deserve ~ Keeping you and your Mum in my thoughts and prayers ~ Ally x
Awww...Mort, I just want to give you a great big hug. I'd help you fill out the forms if I were closer. I know how easy it is to bury paperwork. I've got a pile of it myself that I need to address. Bills....insurance stuff...etc. I'm glad you are coming to terms with the MS. I am so sorry it's been so tough. I wish I were there to help you somehow.
I'm glad you opened up some to us. I knew you weren't telling it all. I had a feeling. It's ok to tell us. If you are uncomfortable, you could invite certain people to your private journal, or make this one private like mine is. Don't hold in all of your feelings.
Again, I'm sending you a big hug over the Pond. Much love to you.
Pam xoxox
Mort thank you for sharing this part of you with us. I do understand some of what you have been faced with as my brother's girlfriend has MS. Please seek all the help you can get. Sending you a big hug and am keeping you in my prayers.
Hugs
Debbie
What a truthful and inspiring entry. Glad you are finally answering the letters, forms and requests. Just hope and pray a LOT of good comes from it. Yes, do follow through. I know it is not the same, but you NEVER can win a lottery, without buying the ticket. The government and other offices would just as soon you never fill out the papers, one less to deal with. But when you do you may get the most caring folks to deal with, expect that, you just might get it and some well deserved HELP! Care giver or not. Sometimes the Care giver needs some care GIVEN. Hang in there, and yes, thanks for the insight. Jack
Hey my fav other man. It's hard to believe It has been less than a year since you have been diagnosed. You have been coping with all this mainly by yourself for far too long and sometimes we can only get to a certain point before something has to give. Getting all the stuff sorted out will make a difference but although you are the carer, You need support also and must take any help offered. You are only human mort. You need a little care and attention too. I understand the whole refusal thing, I didn't take my tablets for 3 days when i was diagnosed with an underactive thyroid as I knew that I would be taking them for the rest of my life. For everything that gets thrown at us, all we really need Is some support and a little T.L.C. I have just stumbled on a brilliant free channel on sky 288 all about Balance and I have been doing Kundilini yoga for the past week and honestly mort, what a difference. The pain In my back was so Intense I couldn't do proper excercise, but this yoga malarky helps the body and you can really relax. It's maybe worth a wee look. Stay strong Mort. Hopefully things will ease up a bit for you. Love Pam xx
i am not as brave as you. when someone ask me how i am i say fine they say thats good and i say not really but whats the use of complaing. this entry is beautiful mort. dont beat yourself up so. i can just see you bravely plodding along despite the pain. you did what you needed to do . anybody would do so if they were as brave as you. me , i would hve just taken to my bed and never got up. since my family is not caring i would have soon been dead. put everyone out of their misery, lol i find life unbearable enough as it is. if i had your pain i know i would not bear it . Thank God you have Mum to care for. it keeps you going I am sure. when the kids where young i kept going for them.i kept busy with them so as not to have time to think of my self.
if i had known then that they would grow up and not have time for me or that i would never have a real friendship with my only sister or never have a husband who loved me i would not have gone on each day. as it is now i have my faith. knowing God loves me and will never forsake me makes up for it all. thank you for your friendship , june
Mort,
Maybe you on your way now to allowing yourself to cope. You are young and most people would do the same and not want to admit that they have a disease that will disable them. However once you address this you will free your mind and be to cope better. Do you have any support or belong to a MS group? It takes a strong man like yourself to go through something like this and still be a caregiver to another. I commend you on this. Follow through with your paperwork and talk to others that have MS, it may help you shed some of your anger which I am sure many go through. If I can help please let me know.
Kelly
My dearest friend I had tears streaming down my face. It's ok...I just fully grasped what you were saying in more ways than I wanted to. I went through the same thing with my deafness. I got angry, refused to accept it...and hid myself away in my home thinking if I did the rest of the world wouldn't have to know. Disability seems like such a harsh, cruel word doesn't it. I had to file those same type of papers here in the US and at times, I couldn't. The forms wanted me to claim the one thing I hated about myself, they wanted me to admit I was in some form or another disabled. All I could think of was that wasn't me. People tend to think you can just get on with your life and act like nothing has changed...and yet everything did. Please dear friend, let us know when your hurting, let us be there for you as you would be for us. Yes, they are only words, but perhaps they might at the very least lighten the load on your heart with kindness. Your in my thoughts and prayers on the smoke always hon! (Hugs)Indigo
Morton the best way to look at it is think of them just trying to help you. Those forms are shouting to the world hey, look I'm disabled, it's saying that your entitled to help so why shouldn't you take advantage of that? I love you and I really admire your strength and courage to do what you do! I want to hug you and help out where ever I can xxxxxx Just know that we are here for you x
Jenny
http://journals.aol.co.uk/Jmoqueen/MyLife
Hey Mort, we all hide from stuff from time to time and your biggest concern is if your symptoms get worse who is going to look after your mum! which is understandable pluas you say you have always been fairly active, and you keep going which is your way of showing your ok, however we al need help sometimes and it can take a lot of courage to ask for it, so you go ahead and fill in the forms etc and see waht assistance you can get.
Regards to mum
Take care
Yasmin
xx
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