So very tired

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1

I am a 36 year old mother with a 2.5 year old genius, married to a lovely man who at present has switched roles with me in propping me up as my whole life seems to revolve around pain.

Normally I am the strong one who people talk to and come to with problems etc. I've always been a good listener. My life has changed so much in the last year because of the pain that ATN has caused me.

I work full time as a Finance Manager at a local building society and have so far told my boss, who is the FD, and have told the HR manager. Today I told the CEO as he had noticed that I seemed to be working from home quite a bit and had even asked my boss if I really was working from home. Fortunately he was very understanding but suggested at some point that I might email the office and branches to let them know that I was suffering from an "illness". Got to say that I was fairly horrified at the prospect, knowing how offices gossip etc. After talking to my boss, I am even more determined NOT to tell people. I for one am having to come to terms with being heavily medicated and that pain relief is not a weakness, something instilled in me by my family.

I struggle at work, I am tired, spaced and really have to focus to perform my job to my expected levels. On the plus side I am working really hard when I am at home as I worry that people assume that I am not and probably sitting and watching awful UK day time TV.

This latest attack has been going on since March this year and today is a really bad day. It even hurts to talk, which when you are normally an outgoing person, is tough. I feel light headed, spaced and in major pain. I am slowly building up the Gabapentin along side Amitriptyline. I have high hopes that this combination will eventually work but also worry that the side effects will affect my work. I'm not sure if this is how other people feel? If so, how do you cope? Have you made everyone aware of whats going on or do you just soldier on?

I've got a lot of reading to do and combinations to try and am grateful that I have an understanding GP who is reading up on ATN and completely open to my suggestions. It's a struggle and whilst I try to remain upbeat for my family, days like this are really hard.

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Hello Nicky,

Ah, whether to tell (the workplace), or not to tell. It's a rather HUGE decision, and the fact that it gives you pause is good, because it means you grasp what might be at stake.

Without knowing you or the specifics of your condition, I believe I can say that you have two general "paths" and the first path is the one you're already on, where most of your co-workers know nothing (directly from you, anyway). As a condition worsens, and as the years pile on, this may become untenable. But if you can do it, I would recommend "keeping on keeping on" in this fashion.

If you do TELL all of your co-workers, I think you should also prepare for what it might lead to, and in many jobs, it can be POLICY to remove the "lowest on the totem pole." It is now very "fashionable" even in many "top" corporations to "force" the lowest percentile performers into "other" positions, or to preclude them from getting raises and good evaluations. It just IS.

And so what I recommend, if you take this "second" path, is that you simultaneously also at least BEGIN to consider a Case for Social Security Disability. This process takes YEARS, and the sooner you begin it, the sooner you will prevail, if your case is a legitimate one. I would also involve your Treating Physician in this decision, and begin to gather ALL of your medical history, and this is a good exercise for anyone with a severe illness who is working.

These days, younger kids especially think nothing of "sharing" so much information, but the knowledge that a co-worker has an illness can and often does lead to a "bad" place. The decision of whether to "tell all" is, I think, one of the largest and most consequential decisions a person with "our" affliction will ever make. Do NOT do it lightly (it sounds like you are indeed following this advice, but I stress it for others who might read this).

Once you "tell," you cannot "un-ring that bell," and people who are healthy and have never been ill or who have never even lived with someone with a life-altering illness can, and often will, treat you and "your condition" as a sign of weakness. It's the way much of nature works, and sadly, some people cannot ever "rise above" this. Carry On! (jqt)

3

There is something about the TN / Workplace topic that bothers me. Nicky and John hit both sides of the coin.

As I read Nicky's post - I find myself thinking that we shouldn't have to keep TN a great big secret. If we had a "visible" desease, people would be forced to deal with our struggle. One of the purposes of our site is to bring more awareness to TN.

Then I read John's post and it really makes me think. Maybe we are fortunate our struggle is not so visible. We can pick and choose when to tell people. We can hide mask our pain. The reality is - those with disabilities ARE treated differently. John has a point - there may be promotions, etc in jeopardy if everyone knows. Where do we fit in? Where do we WANT to fit in? John makes a real good point about the "unringing" the bell.

I am very fortunate that I work in a small accounting office, so I can share with my co-workers. It has been a challenge, however to share with my clients and I thought long and hard about when to let them in on the 'secret'. Eventually my work was affected so I had no choice. I still struggle with how much detail to provide and which clients need to know, etc.

This is a real debate. We want more awareness, but we still want that secret veil to protect us.

Best of luck to everyone facing these decisions at home and at work

Elaine

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Nicky, I was diagnosed with ATN January 2010 and struggled doing my job as a manager with a large insurance company for most of 2010 changing medications, dealing with the pain, blurry vision and the extreme fatigue. I told very few people(my boss & another mgr) and most of my team knew I had TN, but I tried to keep most of my problems from all of them. Finally in 2011, I got worse and went on part-time disability for 4 months and then the company forced me to take full-time disability in June. I started to let some of my employees know when I got worse. It was to hard to hide it anymore and I needed to delegate more of my duties. They were all understanding. I know how you feel since you don't want to give in and you are worried what people will think. I think it is a gradually process when you are dealing with this type of illness. If you have a good support system at home and if your boss is understanding you will be fine. Make sure you are good medical advice and getting a 2nd opinion is always a good idea. Hang in there. Living With TN is a good support system for getting advice, for sharing experiences & ideas and knowing there are other people who share your burden and care about you.

Jim

5

Thank you so much James, Elaine and John. It's given me much to think about.

I work for a small local building society and achieved a promotion at the beginning of the year which I know is not in jeopardy as my boss is indeed very supportive, he disagrees completely with the CEO about emailing staff to let them know about my "illness". I am lucky that I can work remotely from home so on those bad days this an option for me.

I feel so strongly that I don't want to be ruled by this but also a realist that knows that there will be days where it wins the battle. It's helped so much to get your input.

Many thanks x

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Thanks for that Chris. So far the FD is aware and my team (as well as the CEO) at the moment I am going to just keep things quiet and take it from there. Unfortunately like most of offices there are those that gossip and they have probably noticed me working from home. My team is now aware that on “hard” days I may be at home working and is anyone questions why they will respond with “because she is”!

7

I'm a control freak, and one of the worse things about this condition is that I can no longer have that control. I'm slowly learning and figuring out who I am now that I have this condition. It's very hard, especially like you said, when you've always been the strong one.

I had the opposite reaction at work. Even when I went on a medical leave of absence, my boss would still list me as his replacement in his succession plan. It's like the condition is so invisible that they still want to promote me because they don't understand how real it is.

I hope your new med combo works out. Once I got to 100mg/day on the Amitriptyline, it really helped lower my pain. I still have pain 24/7, but now I don't wake up wishing I was still asleep. We might add Gabapentin too, so if you don't mind, please keep me posted on how that combo works out for you.

And screw what everyone at work thinks. Your health is the most important thing, and stress makes it so much worse. So if your boss feels you're doing your job fine, nobody elses's opinion matters. And be proud that you're still able to work - that in itself shows how strong you are.

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Thanks for the comment Crystal. So far the Gabapentin have had litlt effect but my dosage is low. I am slowly building up the dosage under my GP. It does make me feel quite light headed and “spaced” for a while but not really helping with the pain. Struggling with fatigue at the moment but am going to also try and boost my exercise this week to help feel more alert. I’ll keep you posted x

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Nicky, How are you doing ? I was on Gabapentin for about 1 year and as I increased the dosage up to ■■■■■■■■ mg, I couldn't take the side effects of brain fog(concentration), dizziness, balance issues & blurry vision. It did take care of most of the facial pain effectively. Everyone is different as far as side effects. Your GP or a pain mgt specialist will be able to help you regulate your meds. I worked as a claim mgr for a large insurance company while I was using gabapentin and as you've noted, it is very difficult to concentrate and do analytical work. I will keep you in prayer.

Jim

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Yes I am struggling James and have even resorted to Omega 3,6 and 9 to help with the concentration aspect! I’d already been struggling with “Mummy brain” after having my son so this on top means that I often forget what I was about to do and really do question my own ability and conclusions. My GP did want to start me directly on Tegretol but I was nervous about the side effects so went with Gabapentin. I’ll keep you posted

11

Nicky, I hope the Gabapentin works for you. It worked well for about 1 year. Hang in there. I am using Trileptal currently and the side effects are minmal at 600mg per day. Peace.

Jim