cmt interfere with work?

[SallyH_NCCMT]

Hey there, this is new for me. I've been struggling with this disease alone for several years now. I had surgery almost a year ago to reconstruct my foot that fell apart due to "chariot arthropathy". Basically, as I understand it, because of the disconnected relaying of info from my brain to my foot; the bones in my foot became saturated blood taking on the consistency of butter. I had to wait a year, wearing a boot, for the bones to regain normal consistency. I had the surgery, had a 6-month recuperation off from work. I've been back to work for four months and I'm feeling a lot of pressure and intolerance. It's like they expected me to be 100% "fixed" and don't understand why I'm having horrible back spasms and still in the stages of recovery.

Here's my question: is anyone else experiencing intolerance on the job from management and/or coworkers? If so, how do you manage the daily fallout? I'm under a microscope and they think I'm incompetent because it takes longer to do some things. Most days I'm feeling so discouraged I want to quit but then figure how will I get another job? Any thoughts or feedback is greatly appreciated.

[oliverdeb]

hello Sally, i am very sorry to hear about the struggles you have, did you present you employer with a Dr certificate to state your CMT and to state your limitations ? the other issue is did your employer discuss this with you ? and did they offer any help to make your job a bit more manageable ? do you have a good relationship with your employer ? i can see this is not an easy situation to be in . i experienced it myself and i have CMT , i just had to resign from my job. i just could not bare it any more. but if you can manage i surely encourage you to stay on. Sally i know this is a difficult decision making , can you go part time ? are you getting physically better and mentally ? because when i found out i had CMT i fell into a depression . Sally i think you need help from your Doctor and see what he has to say about all this , one other thing if you dont get the answers you are looking for , go and see other doctors that understand CMT , keep the courage up , people sometime can be cruel but you answer to that is the hell with them and dont let anyone put you down . your friend Oliver De Battista

[SallyH_NCCMT in reply to oliverdeb]

Thank you for the encouragement, Oliver. Unfortunately, my employer is building a fictitious case to get rid of me. It's really frustrating because I have worked in supply chain planning my entire career. Now I've relocated to a state 800 miles from home and family just so they can throw me away like garbage. It's very frustrating to know that no amount of truth is going to help me because they twist everything into something that makes me seem like I'm screwing up. This week I was told I'm no longer permitted to park in the spot they had directed me to park since December. HR said they're not sure it's something they are "required to accommodate." I absolutely cannot walk the distance from the lot to the building and they are tracking my time calling me late as I drag into the building after driving around looking for somewhere close enough. I can see the writing on the wall and normally I'd fight like hell but I'm tired. I've been in a boot for almost 2yrs, had two surgeries on my foot (chariot arthropathy), all kinds of painful physical fallout from wearing the boot. I'm exhausted. I'm too young for retirement age and terrified just thinking about a job interview. I'm fresh out of ideas. Thanks for tolerating my ramble.

[oliverdeb in reply to SallyH_NCCMT]

hi Sally. just got your text. no its not ramble at all mate. well i knew something was not right with your company. they dont want you there . so now is what are you going to do about it ? i wish i can speak to you in private. but i dont think i can , you can get in touch with me on Face book if you like. same name. well it looks like you have to move on with your life . easy said than done but we all come to cross roads in our lives and we have to face them right ? Sally keep your cool and use your head is the only way forward. get family support too. i am sorry you going trough this. oliver

[Exhausted101]

Hi Sally, I don't know if you're in the UK or elsewhere but could you ask for an assessment from Occupational Health?

Is your GP/Consultant able to write a letter to your employer to explain that CMT is an on-going condition and that it would be helpful for accommodations (or at the least some lee-way)?

I've been fortunate in that I've been with my employer for 13 years and that they have expanded in size - and have been pushing their EDI policy (admittedly most of that is to ensure they're in line with legislation) but generally have been helpful. There are gits at all levels and in all industries though. If you can't ignore them are you in a position to change your role?

I have days where I get home and have to have a lie down I'm so tired and this despite working in an office environment. But, there are days which are good although sometimes it feels like they're few and far between and I try to focus on these and try to manage my out of work time so I'm not knackered before I even start! .

[SallyH_NCCMT in reply to Exhausted101]

Hey Exhausted101, I know exactly what you mean. If if have more than two errarnds to run in a day, I'm exhausted. I need a two hr nap before I can do anything else. Just putting the a boot on the left and brace on the right foot is exhausting. I truly hope you find a combination of things that work for you that will give you a better quality of life. God's blessing to you.

[Kieran85]

Am a 31 year old bricklayer , and every day is a struggle with my hands , my thumbs don't work anymore ! So am guessing the nerve is completely dead ! I get drop foot too , which I think is due to my heavy work boots ! Am self employed too so am on price work which doesn't help ! But luckily I've got no1 looking over me ! I go at my own pace , that's all you can do, ya can't help but ask your self what did I do to deserve this disease ! But I refuse to give in to this ! I try live a normal life , gym , running , swimming , and that helps me , hope things get better for you !

[SallyH_NCCMT]

Thanks for the encouragement! I refuse to give up!