Sarcoidosis worse than ever in my lungs and heart, so depressed

Thanks for the reply. I need to see my GP anyway and will ask if he can help if the Brompton haven't come through yet.

Thanks for the message. I am resting plenty, now need to try to get out a bit when I feel up to it. It's nice to know we aren't alone.

Thanks for your reply. I am certain depression goes hand in hand with these sorts of illnesses. In fact, I began to feel depressed before I realised I was getting sick again. The fatigue and inability to get much done takes it's toll. Then, add the news of just how bad things are looking, and it can be hard not be more depressed. I am not on meds yet, waiting for an admission to get IV steroids. If they can't move it up, I am willing to give oral pred a go again. You know you aren't well when you're actually looking forward to steroids!

i have dealt with this before and always been strong. I am so grateful for so many things. It's just going through the worst of at the moment that can get one so down. I figure we are all allowed some time to feel sorry for ourselves, we just can't let it go on for too long. I think it's the limbo I am in that is making it so hard to move on. And then, yes, it feeds back into my illness.

i have already been seem at the Brompton, so don't think I need a referral as such, but maybe my GP can still help. It's nice to have people that understand, thanks.

 

Thanks for your message. Trust me, I know how to get through this.mits just that it's all come on top of me again. I was a mess in 2007, but picked myself up and moved on. I think it's can actually be good to be sad, to grieve, for yourself, for a bit. But then we must pick ourselves up and get on with things. It's just really hard being stuck in limbo at the moment. They tell me I need aggressive therapy, but then don't schedule me for two months! I am also incredibly grateful for the NHS so don't like to complain, but it can get frustrating.

I am actually a writer! I am also working toward a degree with the OU in creative writing, so not so into writing articles, but still. I haven't had the energy to write for a few weeks really and it makes me so sad. I hope to get some short stories published and eventually a novel, but will see. I am also a silversmith, but need to steer clear of fumes an dust, so will probably stick with some other jewellery making techniques if I ever get back to it.

but yes, I am depressed at the moment. I feel so out of control and think if I could just regain even a small bit of control, it would help. Also, it just doesn't help that I can't do anything without being attached to an oxygen tank. I will be okay, but it takes time to adjust.

best wishes for your current health issues, hope you get your answers soon.

Hi Di,

thanks for for the message and info. I had emailed Lucy already on Wednesday and am just waiting to hear back, hopefully with the good news my admission has been moved forward, but I'm not counting on it. I am very grateful for being seen there, but of course, even the best place isn't perfect. Best wishes. Maybe see you there some day.

Ain't that the truth Di?! I've got to wait to the end of next month  for ENT  which is 8 weeks from referral by my GP. Heigh ho!

My partner is completely unsupportive. Today has been a bad day. When I'm down I default to being quiet rather than snappy. She feels my quietness is a sign of contempt. I've explained it's the condition and medication but she doesn't want to know. It makes me feel worse. Great eh?

Think you need to have a serious talk with your partner as you really do need their support and understanding. I used to have an ex who was never sympathetic when I was ill but when he was I'll the whole world stopped for him! my last partner was totally opposite very caring, sympathetic and could never do enough for me particularly when I was pre diagnosis boy was I grateful!

get your partner to read this page  because the stress of your situation won't help either and she needs to understand that.

With sympathy

rachael

 

Hi June,

thanks for your message. I am actually on no meds at the moment. Well, I tried different iron tabs, but all made me I'll, so waiting for an infusion. I do take cyclizine when needed for nausea and cocodomal for pain. I don't think any of these are affecting my heart. Besides, the episodes are identical to those I suffered years ago, so pretty sure they're my sarc. It makes sense as all signs point to a flare- blood count a mess, ace elevated, lungs now terrible, etc. 

certainly, there are many aspects that contribute to the depression- fatigue, malaise, guilt, anaemia, bad sleep, sadness which then feeds into depression, oxygen sat which drops to 58%, etc., etc. I asked my GP about amitriptyline, as have seen it mentioned many times on forums and such. He reckoned it was quite old-fashioned and there were better options these days. I think I will give it a bit of time and see how I feel. I don't really want another drug when I a, soon faced with loads of meds.inhave been on plenty in the past, even some anti-psychotics to counteract the mania brought on by the pred.mso, will see where I am in a couple months, I think.

i am waiting for a four day admission. They told me the hold up was mainly availability for the bronchoscopy plus a bed. I understand there are lots so us waiting, but I feel I am getting worse all the time. They said it's not ideal to have pred before the lavage and also wanted to treat with high doses intravenously, plus my bad reaction in the past. I don't think my heart will settle down until I get treatment. Ugh. I hope to hear on Tuesday. Just remembered tomorrow is a bank holiday so won't be hearing then.

I am very lucky indeed to have my husband. And my son, who is only nine. But I worry how this affects them. They act like all is fine when we all know it's not. I worry one day it will all come to a head. 

I will ill try to be patient, but if I have a serious turn, I will not hesitate to call or show up at A and E. All the best. X

Hi

Im sorry to hear that you are not supported. That would make me re-think things. but when days are bad, i do know we dont have the stength to even think!. I left my partner after quite a time after diagnosis. He was 'supportive' he said. But wouldnt accept i wasnt better as i was on meds.

http://www.sa-uk.org/Understanding%20Us.htm This has a section on Understanding Sarcoid for family and friends. I found it useful and it made me cry realising other people 'get it'

Thanks Rachael. That's not going to happen unfortunately. Raised the subject this morning and got a load of abuse. Cheers.

Oh dear, none so blind as they say. Thinking of you

rachael

Oh Gustav I'm so sorry to hear that you have no support. I totally agree with Rachael that you need to sit down with your partner (if possible) and show her all the literature on sarcoidosis and all the posts in the different forums on sarcoidosis. I bet if the tables were turned she'd be looking for lots of support. Getting stressed out about her lack of support and understanding isn't doing your sarcoid any good either.

You could try taking her with you to all your doctor appointments (or even just one) so that she can ask questions herself. Personally I think she is being very selfish and mean and doesn't deserve a partner at all if she cannot give support or show any empathy.

My husband and soulmate sadly died 14 years ago but I know if he were here today he would have given me all the support I needed along with his unconditional love.

I hope you can get her to rethink the way she is behaving and I hope it is only because she is ignorant of the effects of this disease. The only answer is to talk about it.

In the meantime remember you have all the support of the many forum members so you can spill all your feeling and fears anytime here.

Best of luck,

Big cyber hug ()

June

Hi Felfin,

Your doctor is right that Amitriptyline is a bit old fashioned and to be honest I asked for it because no one was offering me any help. My GPs are penny pinchers. They even fought with me when I asked for enteric coated medications because I was getting nausea and gastric problems. However I did find the amitriptyline did help with some of the depression so I'm glad I asked for it. (any port in a storm as they say!)

As Morag said call your consultants secretary too. It is amazing how they can help with things like bringing your appointment forward because they have access to cancellations and have bigger clout than the wards. The wards have to comply with what they are told and who will be admitted and when, whereas the secretary can shuffle admissions around if need be. Give it a go, you've nothing to lose. Just remember to tell her how your condition has deteriorated.

Good luck,

June

Hi Gustav,

I am sorry to hear about the problems with your partner. I am lucky, my husband is supportive. However, when I was first diagnosed we were sharing a house with my sister and she was downright cruel to me. She said at first it was all in my head, then that I was exaggerating, just wanted attention, and finally that she had lost all respect for me and was ashamed of me. It made it so much more difficult. I asked her to come to doctors with me to hear things directly from them, but she refused, saying she wouldn't feed into my hypochondria. We moved out and eventually moved back to the UK. I didn't speak to my sister for three years. I just couldn't have that negativity in my life. 

I am not saying you should break up with your partner. But, I don't think one should be in a relationship that is unsupportive and even damaging. I know it  is scary to think of being on your own, but I dont think you should keep putting up with that sort of treatment either. Ugh how horrible. I am so sorry.

i obviously don't know you or all the details of your situation, so please don't take any of my 'advice' too seriously. I am just saying that nobody should have to suffer like that from a loved one. If you can get her to go to a doctor appointment with you, then great. She owes you that much at least. Good luck and in the meantime, remember you can always get support here, but of course, it's not the same. Best wishes. 

Sometimes the people closest to us are the ones who find it hardest to understand a condition. I'm not in a relationship but my mum complains that I'm either very distant or exagerating and doesn't seem to get that at times I'm distant because if I actually say how I'm feeling I'll get the "exagerating" comments. 

Hopefully you can find a time when you can both sit down and talk sensibly about your condition and how it can affect you. I guess because its a relatively rare condition and not very well defined - its an inflammation that can affect almost any organ of the body, not sure exactly what causes it but the symptoms vary in type and severity depending on where its located and how badly the person is affected; oh and it can come and go as well - its not the easiest concept for anyone to get their head around. Even if you can persuade her to look at the basic info on sarcoidosis on this site that might help. That where my GP started me off when I was told by the consultant that it was a potential diagnosis

Well put Morag. You know I was trying to think what the doctors had said to me and it dawned on me that not one of them told me what sarcoidosis was. I don't know if one thought the other had explained it but I ended up getting all the information on-line and thinking how little information there was.

I was also thinking that people we love get frightened as to what is wrong and get angry with us rather than at the disease I suppose. With so little information I guess people get frustrated too so think we are malingering. It is a terrible thing when you have to 'prove' you are ill!

Think you have hit the nail on the head there June! As you rightly say we are constantly having to justify our condition. DWP take one look and think because there is no visible disability that there is nothing wrong with me likewise work treated me in the same way although in fairness occupational health did back me up and told me to go home and forget about work! My tribunal which reduced me to a gibbering wreck fortunately found in my favour but not before I had said to my sister that we shouldn't be made to feel like this and have to justify our existence. Sometimes it feels like we are used as whipping boys however the relief when they concede there is something wrong with you is immense but in no way compensates for the angst it causes along the way.

Yes right back at you Rachael. It's so degrading sitting there being asked if you can raise your arms above your head or at least high enough to hang your coat or if you can carry a pint of milk (sorry a litre). If you can then you are rated as fit for work!!!!! Like you mine went to tribunal too although thankfully I didn't have to phisically attend. I wrote them a very angry letter asking them how they could decide I was fit for work when they hadn't even asked my GP anything. I had to attend the jobcentre and at that time I was swathed in bandages following surgery on both feet. I looked like one of those cartoon characters. I was in so much pain but if I hadn't attended I would have lost all benefits. Then you see the true malingerers getting their benefits without even trying and it makes you so mad. I am so dreading filling in my the PIP application next year. I have an indefinite DLA claim but apparently that will mean nothing. I bet they will have me off all benefits and back looking for work, illness or not. 

I've had everything from being called a "fake" to being told that I look into the condition too much online. For someone who has had so much support from me over the years, I feel totally betrayed and devastated. Thankfully there are resources such as this. Cheers.