PBC Foundation
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Oh nooo "You Look So Well " Screeaaamm

I had all my hair cut off last Saturday as I have no strength in my arms anymore to hold the hairdryer !! Was a sad day go to work and everyone says it looks great and the new colour us fab !!

Inside I'm screaming I didn't want to have it cur off !!

Then today I have my mid year review my team leader says you look so well ! I smile and say thought I would give you this to put in my file .

It's the latest report from my neurologist

Complete and utter silence as she reads it !!

Whey hey reality hits her between the eyes like a thunder bolt !!

OMG she says I had no idea !!

The report advises of all the meds I'm on and the fact that PBC has a huge impact on my fatigue !!

The numbness un my legs and lack of balance are because my leg muscles are minus 4 and retreating and needs further investigation as my cervical spine has degeneration and there is a question mark around my t5 vertebrae.

This means he wants to do a full spinal mri ASAP and also needs a further blood test to check my muscle mass creatine levels. I need to have my amitriptyline increased gradually increased in 10mg steps to help with the muscle tension .

I may also need a muscle biopsy at a later date .

She looks at me and says now I understand why you cannot do any extra.

She then clears her throat and said how are you managing to work full time !!

Pricless when the dla turn you down !!

Slightly bemused and shatterd

Karen Xx

7 Replies

Sorry to hear your having a really bad time at the moment. Its so difficult to try and explain to people how rotten you are feeling when they have no idea! They look at you and think you can't be as bad as you are making out...you must be trying to pull the wool over their eyes... coz outwardly you look so well. If only they could spend one day in our shoes aye!!

I hope you have good results from your test and that the increase in your drugs ....however little...ease some of your discomfort.

Try and keep your chin up. Best wishes


Sorry to so long to get back mumofthree !

It's Saturday and I'm shatterd want to lie in but so much pain had to get up.

Thank you for your kind words.

I've had a letter from Dr the surgery ate going to give me a injection in my hip as I have bursitis in both hips so hopefully I might have some pain releif on one side.

My team leader has been asking me allsorts of questions now and is slowly grasping it .

So I have decided now if I am having a bad day I will tell her !

Now I just need to let my family in on it !

Sending you a big hug



Hi again cowren

Glad to hear you had good news from your Dr, hope you won't have to wait too long before you have the injection. You do sound a little more positive now though.

Its great that you are gaining some trust in your team leader too. You'll be surprised how much of a weight that will lift off your shoulders knowing that she understands why you may be having a bad day. Unlike you I don't have that trust with my boss. Unfortunately with my boss, if your not one of her gang of work mates who also socialise with her outside of work, she has no interest in you other than that you get on with your work.

Have you been hiding how you feel from your family too!! Join the club...I am an expert at that. I've learned to be a bit of a master of hiding how I feel and keep a lot to myself..easier said than done sometimes though...but no one wants to hear someone moaning all the time do they. I was diagnosed 19 months ago, and to be honest I have only told 9 people that I have PBC....my husband, my sister, her partner, 3 close work colleagues, my boss (only because I had to.. after being kept in hospital and had a return to work sick interview), and my two eldest boys (25 &23). I have not told my parents because they are not very well themselves and I don't want them worrying about me.

My boys know I have osteoarthritus, osteoporosis and an autoimmune condition called PBC that affects my liver and causes me to be tired and have a lot of pain, but other than that I have not told them anything else..Neither lives at home now but I speak to them most days and see them every Sunday. I do not know if they have read up on PBC, they have not mentioned to me if they have and I do not talk about it. As far as my youngest boy (13) knows, I've got problems with my tummy and a bit of arthritus. I have tried to explain to my husband but he doesn't really understand....he says the aches and pains can only be expected when you get older....I am only 52...when I am thoroughly exhausted....you need to pull yourself together...so we don't talk about it!

I chose to confide in 3 of my close work colleagues who are supportive and have learned to read the signs and can tell when I am having a bad day without me even having to say anything. However when I first told them.. 2 automatically assumed when I mentioned Primary Biliary 'Cirrhosis' that I must have a drink problem....I don't even drink!! I just didn't bother mentioning PBC to the third, I just said I have an autoimmune condition...Why do we need to justify ourselves by saying we don't have a drink problem because of other peoples ignorance? For this reason I have chosen not to tell anyone else I have PBC unless I really have to..like I had to tell my boss!.

The only person I really confide in is my sister..my rock...she accompanies me to all my hospital appointments...I don't know what I'd do without her. Oh, I nearly forgot we've also got our friends here that we can confide in too.....who know exactly how we feel... which is brilliant!!

Take care of yourself cowren and all the best with the injection


I haven't been able to work since the end of March due to extreme fatigue, intractable itching and having bone and joint pain in my back, hips and legs that is causing ambulation to be difficult. Spent 9 days in the hospital due to fall at home, abcess occurred where I hit my left side/hip on my dresser anyway area became very painful and red over the next 3 days. Went to the ER, not only did I have this abcess but my WBC count was critically low at 0.9 so I was taken to surgery for I&D of abcess, placed in reverse isolation for my protection, then had severe reaction to an antibiotic and my CRE went up to 3.5 sending me into acute renal failure. I ended up losing 15 pounds, couldn't eat due to nausea, albumin level was 2.3 (So wound not healing like it should cuz protein levels down), was given Nupogen to bring up WBC count. Once I was discharged home, wound care continued at home because wound had to have packing placed inside of wound. My hubby got to be my nurse. Anyway, I was and stil am pretty sick, I have to continue to force myself to get up and attend my dr appts. Well one of my Dr appts was at 11 am and I called a friend to see if she wanted to join Leo and I for llunch. She accepted. Now she is a nurse, has researched this disease when i was diagnosed but hasn't seen me in awhile due to her work schedule and my visitors being limited at the time. One of the first things she says to me is : " Well, you look good!" But as we ate and visited, she began to notice how my concentration is impaired and she had to listen carefully and several times had to get me on track again. When it was time to leave she got to see my slow, unsure footing and grimacing ambulating to my car. I did tell her since the end of March i have only put makeup on 3 times and I usually don' t fix my hair anymore because I am losing strength in my hands and wrists esp my right. I am constantly knocking things over as I reach for something. I am going to get my haircut soon , when I get the enery, to have my hair cut because I cannot care for what I have. I understand how you feel, even if my hair looks better, the point is I dont want to cut it and i dont want to have short hair, I want to Use my flat iron to fix my hair. Sound like a little kid not getting their way. But you know when she said, You look good. I thought of the cholesterol deposits that are on my face, the broken blood vessels, Eyes bloodshot, tired eyes. they dont sparkle anymore, Losing my hair, losing eyelashes, losing eyebrow hairs, my hair not shiny, and fighting to keep my eyes and mouth moist due to Sicca Syndrome that was diagnosed 2 weeks ago. But I think the KICKER that opened her eyes is when I got choked on my meal, and once I could talk , i explained to her that I can't eat without fluids closeby due to I am not makiing enoug saliva which is another autoimmune disease. I hope you get to liking you new haircut and I understand that we need to do what ever saves us energy so what little we have can be spent more wisely and productive and on what we really want to spend it on.Anyway sorry so long, I did enjoy my visit with my friend and she loves me and would never knowingly hurt me and i try to remember the people that love you are having to deal to just because they love us and want us to be OK. Thanks for listening


Hi Cherwash

As above sorry for late reply

My god you going through a really rough time wish I could give you a big hug :(

It's such a shame that you had to nearly choke before somebody to see the real you!

As mumofthree said above I think we do become experts at disguisesing what is really going on !!

In work yesterday we had a caricaturist and I had mine done he was so funny and lifted my spirit ! But he said to me quietly you have beautiful blue eyes but I can see your pain so when I draw you I will put the sparkle back !!

This brought a tear to my eye I can tell you !

But true to his word he did and I'm still riding hi on this !!

So I am going to get it framed and when I'm down I will look at it and smile !!

Hi did a good job of my hair too :)

Thank you once again !! This site is good as we are all fellow sufferers but its good to get things of your chest !

I hope you are feeling better today

Love and hugs




I am one of the fortunate PBC group in that my symptoms are not too bad. I did go through a really bad patch for the first couple of years post diagnosis, but now just accept that I am a member of a select group. It does worry me when I hear of so much suffering is happening out there, but following therapy and good medical advice from my consultant I am now living within my health. Looking good is annoying, but any compliment is great. Have just broken hip whilst in Cuba and getting over that by going to gym and having help in water therapy and trying to ignore the other problems. It's hard but head up and look good


Hello Everyone, I have been recuperating at home from my hospital stay. Have began to feel better a little over a week ago. Can eat again, no nausea yet, food smells good. Saw my liver specialist Thursday, lab work, etc. Received call Friday that my WBC is down again to 1.9 My Dr. has now referred me to a hematologist, in fact he made me an appt for next Tuesday. Wonder what is up with this? Karen that almost made me tear up your statement about he was going to put the sparkle back, how bittersweet. Glad you got your hair done. Eventuall I plan to get mine done/cut and to get a manicure. But the Dr. nixed the manicure due to my WBC is to low and I am easily susceptible to infections. Thanks for listening!!!


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