Nicko
1 post
Aug 01, 2008
2:24 AM
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UPDATE AT THE END OF THIS POSTING.
Good Morning, i am new to the forum, but need to tell my story.
My name is Nick and i have worked in the same job for 28 years. s o d p Senior Operating Department Practitioner. (Anaesthetics) i am 45 married with two children, both children left home and now have lifes of there own, peace at last. last May i had both hip joints replaced due to wear and tear, yes i was very fit. i ran, cycled (time trial)10 miles in 28mins. danced and won compititons. played football. and of course worked my butt off running around the hospital saving lifes. i worked for 24hours at a time when it was my turn to work the on/call weekend, sometimes not stopping for a break, madness.
so on the go all the time. even at home, garden, kids, dogs.
until december 2007, my life changed, i had been to three christmas partys danced the nights away on my new hips.
but on the morning of dec 17th 2007 my body decided that it was time to slow this boy down. i dont need to go through the symtoms as you all know very well what they are,i had the blood test, it came back positive, saw the Neurologist,started taking the Mestinon.
But i would like to talk about the THE OTHER SIDE OF MYASTHENIA GRAVIS. lets call it the darkside. what others including the Neurologist does not see. HOW I FEEL. EXCEPTING YOU HAVE MG. HAVING TO DROP MY HOURS TO FIT MG INTO MY DAY. DROP IN WAGE. FEELING WEAK FROM THE MOMENT I WAKE UP, BEING WOKEN UP AFTER FOUR HOURS SLEEP WITH VIOLENT MUSCLE TWITCHES IN MY THIGHS. MUSCLES TWITCHING THROUGH OUT THE DAY. NOT BEING ABLE TO WALK THE DOG, WHO INFACT SAVED MY LIFE, AS I WAS SO LOW I DID THINK TERRIBLE THOUGHTS. SO I WENT OUT AND GOT MYSELF A RESCUE DOG. HE IS NOW MY BEST BUDDY. And people tell me how well i look, but what they dont see is i am dying inside and i dont mean dying i mean hurting because of all the things i cant now do. I know there are members of this forum worse off then me, but i cant help how i feel. please if there is any one out there from the wycombe area, please contact me.I am trying my best to get back to work, but its very hard. sorry about the spelling. Nick Gerrard
Last Edited on 20-Oct-2008 12:13 AM
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Levitas
691 posts
Aug 01, 2008
4:11 AM
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Welcome to the Forum, Nicko.
What you write will ring very true with Forum members.
Myasthenia can be a very lonely disease and one that is rarely understood by friends and family. Neither does it elicit sympathy as there are often few outward signs of “illness”. I’ve lost count of the number of times I’ve been told how well I look – even when feeling dreadful!
But here you will find both understanding and sympathy. Above all you will receive reassurance and encouragement. Reassurance that although at present there is no “cure” but the treatment will be effective and you can look forward to better times.
The hardest lesson to learn is to be patient and not to expect miracles. Finding the right drugs for you is not always a simple matter and most (in fact all except Mestinon) take months before you feel the maximum benefit. That is the biggest down side.
But eventually you will find the treatment does work and life will return to normal.Here you will get good advice and once you have accepted that for now you have to avoid stress and slow down the pace of life, you will gradually progress towards a full recovery. If you look on the main site you will find there are branches of the MGA in Nottinghamshire and Leicester and I am sure that you would find both very welcoming. They will know if they have members near you. ----------
Levitas
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scottyd
21 posts
Aug 01, 2008
5:13 AM
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Hi Nick Just wanted to support Levitas's comments. MG is lonely, you think people think you are a fraud because they generally don't see the bad times, the frustration as you are not able to do the things you used to. I was a management training consultant, with a very active style. Now I find if I try to raise my voice at all my speech starts to slur and if I try to use my normal style after about half hour I feel exhausted. So I have had to learn to adjust my life to fit with the MG. This is hard but is doable with patience and a good support organisation. I have had great support from family and friends and from the Association members both face to face and through this forum. So I would encourage you to get involved as much as you feel able as you will find people here who really understand your feelings and will support you. Good fortune Derek
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redtail
71 posts
Aug 01, 2008
5:27 AM
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Hi Nick welcome to the forum. Its a very frustrating disease!! Just today I went to see my mentor at the work rehab centre I go to, and several times she said, "But you're looking so well", I gave in and said "Yep I'm doing great"
Never mind I'm not, and struggle with the simplest things in life, can't drive more than to Mums place 2minutes away. Unfortunatley the only people who seem to truly understand are my close family. I'm so glad you got a dog, they are truly wonderful.
I lost my dear wonderful dog Ned about 3 months ago, he was with me through all my MG moments. Unfortunatley I had to move to a unit where I cant get another dog. I hope comming here helps some(and sorry for whinging on your thread!!)
take care
redtail
---------- "downunder" western australia
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sally1louiselouise
591 posts
Aug 01, 2008
7:58 AM
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Hi Nick, Yes, well, what more can I say, I endorse what has been said by yourself and the replies you have already had. I too get told all the time how well I am looking...if only they knew........if I had a broken leg then there would be the plaster cast and everyone would be able to see the problem, but MG is not always visible.....to be honest, I am asymptomatic at the moment and have been for over two years now with medication, I have been steroid free for 12 months, I am a lot better than many people on this forum and I am grateful for that, it is a long journey but you will get there, patience as they say is a virtue. A lot easier said than done. You will find a lot of support and encouragement here, and if you can relax and try not to worry too much it will be of benefit to you, together with a snese of humour and positive attitude, these things I have found have got me through some very dark moments. Take care..........
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South Wales
UK
Last Edited on 1-Aug-2008 8:02 AM
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ORIE
119 posts
Aug 01, 2008
12:26 PM
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Nicko,
MG is called the invisible illness, Odd name. People do not know I have MG because when I am out and about its because I am well enough to be somewhere else other than home on the couch. When my MG is bad its very bad and when its good its pretty good.
It takes time and patience to learn how to incorporate MG into every day living. Its like having an unwelcome house guest that is staying on and on and on...... I will say MG people get very creative and their management skills are put to the test. You do grieve in the beginning for the life you had prior to MG that is normal. I for one liked changes that I had control over not changes that were just made in my health with out my permission. On the flip side for me I was working too much and too hard and was never still. Well that has changed and I can say for me that is a good thing. I now do the things I really like to do and somethings are just not done. I have learned some things I thought of great importance are no big deal, but being able to breathe and keep your eyes open is a big deal. I had to quit a full time job that I really liked. Four years of working with MG after 27 years in the same company I just took the plunge.In my neck of the woods its called ''cop a walk'' I have not looked back. This year of less stress has made me much better and it has made my MG much more manageable. Its called light at the end of the tunnel.
You are among kindred spirits here and for those of us that wobble when we walk, and garble when we talk and choke on pudding and have our eyes playing random games of hide and seek we know the symptoms are real. Give your self the time you need to cope with this ''invisible illness. AKA MG'' As all here have said you will have better days and the people here not only hear you we understand.
Take care,
Orie
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pam2507
93 posts
Aug 01, 2008
12:48 PM
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Nicko, you've articulated what almost everyone here must have felt at one time or another. That sense of being robbed, of all sorts of things, the hurt when people just don't understand and that feeling of 'if only I tried a bit harder I could make it go away'. You can't, it isn't your fault!
I can so very much empathise with your feelings. I have had MG for thirty five plus years, I'm ok now but it hasn't always been so. The physical disability is bad but the emotions are far harder to deal with. at least you are telling us and not keeping it all inside. Take heart, it will get better x
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pam2507
94 posts
Aug 01, 2008
12:55 PM
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Just another thought....have you ever come across MG from the other side of the operating table??
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LynseyH
216 posts
Aug 01, 2008
3:14 PM
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Hi there, I'm about to go to bed so will confess I haven't read everyone else's responses, but did want to post a quick message before I turn in. When you say Wycombe - you mean High Wycombe? I live in London now but my parents live in Marlow and I do come home on a fair few weekends. Would be happy to meet up for a coffee and a lighthearted moan about all the pain in the butt things that come with MG. I'm pretty much symptom free now but have gone through some awful patches in the early days. Feel free to drop me an email - lyns1712 AT gmail.com All the best
Lynsey
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22yrs old
female
London
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Nicko
2 posts
Aug 03, 2008
11:54 AM
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Thank you all for your very kind words and support.
I have had a great weekend and taken your comments on board. yes i do live in High Wycombe, Bucks.
Nick Gerrard
Last Edited on 3-Aug-2008 12:03 PM
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TinTN
6 posts
Aug 10, 2008
8:15 PM
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My mouth fell open when I read your post about muscle twitching! I have had some of that, actually quite a bit a few weeks back. I sent my doctor an email and he totally dismissed me. He said that these symptoms were not related to MG. He is supposedly a specialist in this area with over 35 years of experience dealing with myasthenia. I was having muscle twitching/spasms in almost every body part - legs, arms, chest, buttocks, etc. I have quite a bit of twitching under my left eye, which is the one that droops. Once and for all, is this MG related or something else? I just wish that someone could give me a definitive answer. My husband was not sure what to think, but when the doctor kind of blew me off he also decided that it must be in my head or related to a lack of potassium. The lack of understanding, and therefore support, really does make this disease much more difficult to live with. This message board is like a lifeline!
Last Edited on 10-Aug-2008 8:17 PM
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Nicko
4 posts
Aug 13, 2008
1:56 AM
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Hi TinTN, I was told by my consultant that it was the Mestinon working on the neuromusclular junction that made my muscles twitch, but i have my last dose of 90mg at about 7pm i am in bed at about 11pm i wake about 5am with muscle twitching. i was also told that Mestinon only works for a few hours. so i would like some one to explain this. The muscle twitch can effect any group of muscle, i twitch any time of the day, some times when i drive i get a megga twitch in my thigh muscles, when laid on the sofa i can get the same type of twitch. hope this helps. if your not taking mestinon and twitching then i have no idea. i get twitching in my left eye. remember these muscles are the weakest of the face. have you had the Blood test for MG. Nicko.
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TinTN
8 posts
Aug 13, 2008
6:40 PM
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Nicko I had the blood test - came back negative. But they did a SFEMG which was positive for "extremely abnormal muscle activity". I'm not sure about the twitches, because I am currently not on any meds. I go back to the neuro in the morning for my 3 month follow-up after official diagnosis. I have a feeling he will want to start meds then. Even tonight, my mom was over visiting and she's like "What's wrong with your eye? It's twitching really fast." I was not aware that it was even happening at the time; although, I usually am. Honestly, everything is so confusing at this point. Just waiting and watching to see if the disease will spread - knowing that it probably already has from other symptoms I'm having. Every unfamiliar sensation is cause for speculation - is this part of MG? Anyway, thank you all for your support. It makes a HUGE difference because no one else seems to "get" it!
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Emma Y
3 posts
Aug 15, 2008
11:31 AM
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Hi Nicko, I was diagnosed April '07 and like you life changed completely I was working as a Sister in an A/E Dept very long shifts, few breaks, 3 young children etc etc. At the time of my diagnosis my consultant said it would take at least a year for symptoms to be controlled by the various medications I was put on as it neared a year he stretched this to 2 years. I can honestly say 18 months later I am almost back to my old self, and feeling good. Yes I can get exhausted and unsteady but on the whole I believe there are worse off than me, and I am grateful it 'only' myasthenia gravis I have and not a terminal condition. Don't know if this will help or not Emma.
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Nicko
5 posts
Aug 18, 2008
5:12 AM
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Thanks Emma,i am 8 months in now and its hard to stay positive. i return back to work next week. working a maximum of 5x6 hour days. i know i am lucky and i do try and enjoy every day. this Forum is fantastic and love and thanks go out to everyone, Nicko
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rachel73
11 posts
Aug 29, 2008
6:39 AM
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hi nick,
Read your message and wept! I also wept at the amount of love and support offered by others. This forum is great, and Im sorry I haven't been on for a while had a bit of a down turn.
I don't know where I heard / read it but getting better is a marathon not a sprint. I have to keep reminding myself. My dogs (i have three )are the one thing that keps me going. It would at times be very easy to swallow a handful of pills and hope it would all go away. Thankfully I seem to be past that now. Reading the very eloquant posts made me realise that we all grieve, we all feel frustration and at least here we have safe environment to let it out.
I hope work goes well for you. You may have to adjust the way you do things like sit rather than stand etc. You learn ways to help you economise your energy so you can use it on the more important things.
Thank you for your post and thank you for being so honest. It helped me look at the way I have been dealing with things lately.
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Nicko
6 posts
Sep 01, 2008
12:43 AM
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Dear Rachel, Thank you for your kind comments and yes this forum is the best tonic. its the place for me come when i need healing of my mind. The body is fine and i do start back to work tomorrow 2nd sept, i have been offered a life line, which is to keep my job but work only 6 hours a day 10 till 4 with 2x20 mins breaks. my roll will be to relieve for coffee and lunch breaks.i work in a busy operating theatre unit with five theatres, it is a difficult place to work when your well. i know i did it for 28 years. it takes a lot of pressure off me,as i dont have to make major decisions of running the operating list.
The hospital managment have been fantastic. again thanks to you all at the MGA and Rachel for your comments. Nick.
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mrloz
55 posts
Sep 01, 2008
4:11 AM
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Hi Nick, I hope you will let us know in time how you are coping with work. I was overloaded too at work and after a year of struggling to cope with the diagnosis and the illness in a high pressure work environment made the decision to go part time. My boys are off my hands too and so financially we could cope. I have to tell you it was the best decision I could have made. All the stress of management has disappeared and I go in to work and leave on time just two days a week. I then have a five day weekend- brilliant. My blood pressure is down and so are my anxiety levels. I'm still in touch with everyone at work so all my old friendships continue. You should see me smile as the management team go into a meeting in the evening. They will be there until 8 p.m.- I'm off home! If you can afford it, think about it. Good luck!
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Laurence in London
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Nicko
7 posts
Sep 01, 2008
9:25 AM
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Thanks Laurence, i will keep the forum informed in due course. Thanks Nick
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mum2six
3 posts
Sep 12, 2008
9:15 AM
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Hi Nick I'm not sure what is wrong with me, had the blood test done yesterday to check for mg. Have had symptoms for 7 years been from dept to dept before ending up at neuro 2 years ago. He's only been interested in looking for multiple sclerosis and as he hasn't been able to find it has basically just said treat symptoms. Not been able to work for 7 years. I can relate to the muscle twitches mine were so bad my clothes moved, can be anywhere in my body randomly like a switchboard. Sometimes so violent my leg or arm would kick out. My gp put me on pramipexole which is a parkinson drug but it's for muscle twitches. It's helped a lot, still get them but not as severe, more liveable now. I get intermittent blurred and double vision and I have a droppy right eye lid and eyebrow, more noticable the more tired I get. Some days knackers me out just brushing my hair. I have a steering ball on my my steering wheel but hubby had to change position of it as it was up at the top and I can't always keep my arms up there. He's moved it the the bottom on the steering wheel for me which is more manageable. I'v been using a mobility scooter for 3 years to do the school run as trying to get the kids in and out of the car wear me out. limbs are so heavy. The best one I got was a neuro told me I had muscle weakness but as I had some use and then I seemed to tire and then loose the strength it was more of a functional problem and just told me to get on with my life. So I do sympathise, I'v had to alter everything including I won't be working again well not in the near future and I don't even know why. I understood what you said about feeling low, the best one I get is like you said oh but you look so well and you always seem so upbeat. take care Julie
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Nicko
10 posts
Sep 12, 2008
12:55 PM
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Hi julie, it sounds like you need an answer, maybe the blood test will be positive for MG. But its worth looking through the forum pages as it has helped me.
Also the kind love and support from forum members. i am lucky being in the Oxford area as i have a nurse i can contact for advice. Hope all goes well julie.Nicko.
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Nicko
12 posts
Oct 20, 2008
12:12 AM
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UPDATE.
Thank you to every one who writes in this forum, it gets me through every day knowing i am not alone.
well i am back to work, 30hrs over 5 days. no more than 6 hours a day, i have to take 2x20min breaks within the six hours. i am on my feet for the first 4 hours then i have two hours of paperwork, its tuff but i get through i come home and do nothing.
it takes time to get used to MG, BUT YOU DO GET THERE.
Or should i say it works for me,i look forward to the day a can just have an office job, the running around is all i have known for twenty 28 years, i ve been asked if i would like to take medical retirement, but i feel i have to fight on. Love to you all, and thank you every one at the MGA, YOU DO A GREAT JOB.Nick Gerrard
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LynseyH
244 posts
Oct 20, 2008
1:12 PM
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Hi Nick Congrats on getting back to work! Well done! Lynsey ----------
22yrs old
female
London
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