Advice on just one tablet..

dreamdaisy

I have never read such stories - I guess you found them on the net? You won't find the success stories on there, good news is not news. I had a spot of bother once, I felt perfectly OK in myself, it was the monitoring that picked up the trouble and interrupted a holiday with an emergency blood test. I was taken off all the meds, resulting in a three-month stay in bed with a never-ending flare until I was put onto oral steroids.

This forum is a caring place. None of us wish to be members here but we are. None of us want the diseases that we have but we do. None of us actively enjoy taking the meds but we take them because they can help. Many of us have fears about the future because the arthritis kaleidoscope shifts, shifts then shifts again. We have to make the best choices we can, on the available information at the time. We have to develop our own coping strategies and methods of dealing with arthritis and that takes time and courage in acknowledging what it isn't (which is far too often hidden by what it is).

Barbara overcame her fears and had a hip replacement - we were all very proud of her for that and, in my case, still am. People have overcome their fears of self-injecting and doing well, others are still struggling with the impact of being diagnosed but hopefully they will come to terms with it in time. We all know what it's like - it is a scary and uncertain world in which we find ourselves. DD

stickywicket

Lou, I think we are a caring, helpful community on here. If we weren't you wouldn't have had so many replies.

You posted “I'm sat here now with the bottle of sulfasalazine in my hand and I haven't even opened them. What can happen after taking one at (sic) tablet.” Many of us replied with words of encouragement, words to the effect that nothing bad could or would happen. We have done our best to encourage you with our own good and / or non-eventful experiences. That didn't inspire you to take them. What more can we say?

We are all in pain. Many people on here have overcome their fears of meds, of injections, of blood tests and of operations. They have all been cheered on by the rest of us because we understand fear and we do care.

In the final analysis we all have to make choices and sometimes the choices are not between good and bad but between a hope and a fear. As the old Cherokee Wisdom puts it, whichever of these two wolves you feed is the one that will grow. I would dearly love for you to feed your hope and courage and optimism but I can't choose for you.

Lou001

I agree this is a nice supportive community and I had no reason to think otherwise up until reading DD's responses, which I personally found abrupt, and rather uncalled for.

I appreciate how DD may feel about my posts, she has an opinion on whether I will take them or not, but I feel there are ways to say it.
If my post was such an annoyance to DD she could've simply scrolled past.
Instead I felt like I was being personally attacked and was made to feel bad for asking opinions and then not taking my tablets after.

I post on here as I do like to here people's stories and encounters with such drugs as mine. I feel some what comforted by others people's experiences . That said, it doesn't mean I am instantly going to take my tablet, it's not as simple as that for me.

One thing I have been trying to do as part of my therapy, is build up some positive reviews of my tablets and of how people deal with arthritis, instead of having a list as long as my arm of negative, scary stories.

I am very sorry if anyone does feel their replies may have been a waste of time, I read all of my replies and they are all very important to me and do help me in some way or another, even if it's not actually taking a tablet.

I will refrain from posting such questions in the future and will withhold posts until I start my tablets - I know I will, and I know I can

LemonMerigue

I'm not on the same pills as you (I'm on methotrexate) but what I have noticed (after only 2 doses) is that my psoriasis is definitely not has 'harsh' it was before I started taking it.

I'm sure if you searched or asked here for positive feedback on the drug, people would oblige to tell you their experiences.

daffy2

Looking back at your first post I'm guessing that your prime concern is something like an allergic reaction? Unless you have a problem with aspirin type substances then that doesn't appear to be an issue in practice, but that doesn't deal with the mind difficulty. Could you come up with an action plan for someone to be with you when you take the pill and for an agreed length of time after who can monitor for adverse reactions and deal appropriately?
I do sympathise with the situation you find yourself in as my son got into such a state with OCD and fear of vomiting that he developed anorexia, and watching his struggles to overcome his mental demons in order to eat was harrowing. I can also understand the frustration of those willing you on to get over this hurdle, knowing that the chances are your life will be much improved.
I do hope that, like my son, you will have a breakthrough and be able to start taking control of, rather than being controlled by, your mental processes.

GraceB

Hi,
I've been reading your posts recently and pondering whether I should reply or not. Then I saw your reaction to the kind support being offered by other forum members.

I take the view that - as I have a history of opening my mouth before engaging my brain and therefore putting my foot in it - I think very carefully before saying anything and sometimes I say nothing for fear of how my comments may be received. Hence the delay in posting a reply.

I don't want to upset you, or post anything I shouldn't, but please remember that everyone on here tries to help one another out of the goodness of their hearts. This support is offered because we want to offer the support, we do this in our own time and with every best intention of trying to help. This Forum has been a tremendous help to me and without this and the friends I have made on here I truly think I'd have gone potty long since. My friends on here understand what it's like to struggle with pain, medication issues and the feelings that come with living with arthritis, regardless of the type.

Personally, if I see DD's name against any topic I always read what she says. I hold her in very high regard and would always welcome her thoughts and opinions.

I sincerely hope that you have success with this quest as I can see that this is really causing you massive worries. It's not nice to be in such a place but with the support that you have in place, I trust that you will get to achieve your target.

I wish you the best of luck.

GraceB

Lou001

My reaction was not at all against the kind support offered by "other" members.

I read what I deemed to be a harsh, rude comment made only by DD.

I joined this forum over a year ago, however I have only ever posted a handful of times. I've never used any other forums before, I don't know each member personally here, I have no idea what the
"tone" of their posts is typically like.

I can only go by experience, and my experience is that when I was extremely down and turned to this forum last week for support, (which was a continuation and an update of a previous post) I felt I had a few rather harsh and rude replied form DD, which in my current state of mind, I found very upsetting.

I'm sure DD is a long standing member here and is well liked, I have no doubts that the advice she offers to people is respected highly regarded.

As an irregular user of this forum I was rather taken back and shocked to read such abrupt replies.
I really can't stress enough I did not imply once that the other members here were not caring, as all have been and all responses have been tremendously helpful and very much appreciated.

Lou001

My understanding of this forum is that we are all in the same situation. Wether my PsA is worse or better than anyone else's, we all struggle and face our own battles daily, which in someway we can relate to another persons day.

When I read things like ""those who are in far worse straits than you have taken the time (and precious energy) to reply, to offer help, suggestions, encouragement and support but nothing has changed""

It makes me feel like I'm being pushed out of your community

I don't think anyone can make an assumption to the severity of my condition based solely upon the small number of posts I have made or my inability to take prescribed medication.

And I say inability as that's what it is. I have a fear. I am receiving treatment for anxiety. I'm not just sitting here accepting pain and refusing meds.

I have severe psoriasis, some days I can't move as my skin is so sore, and on top of that, my hands are inflamed, I can't open door handles, jars, lids...
I can barely move my wrists, I have severe hip pain and pain in both of my shoulders.
Each and every time I put pressure on my feet it feels as though someone is breaking my bones Into pieces. I struggle to straighten my arms as my elbows are just too sore.
I hardly sleep due to pain, anxiety and panic.
I go to work full time, I'm in my final year of studying and I attend college two nights a week, all of this mixed with anxiety, the sheer panic & worry of what I have done to my joints, the worry of taking tablets for life.
Thinking about my wedding day, will I be walking then, thinking about starting a family. - it just all gets to much. I am mentally and physically exhausted.

I know I'm not the only one, I know there are people who are worse than me, but that doesn't mean I'm not equally effected and struggling with my own journey.

Sure, I could improve all of this by taking tablets, but if only it were that simple. It must be so hard for people to understand me, I get that.
But anxiety, is so debilitating, it's crippling and tiring, and there have been times when I just physically have not had the strength to start tablets, I just can't take any more worry.

I feel angry, angry at myself for allowing my stupid fears to control me. Angry that I'm in pain, angry that so far I haven't been able to take one tablet, regardless of all the reassurance I have been given.

I have my CBT session Friday, and I know, I am sure I will take my first tablet then. I can't go on any longer putting this off.

I know we are all scared of medication and none of us want this awful disease that we have. But we are all different and we all deal with things in different ways, right now I'm not dealing with this very well at all.
I think some parts of me haven't yet accepted this disease. I haven't yet accepted that I'm not even 30 and I can't do the things most of my friends my age can.

I do however we accept that I have let my anxiety get the better of me and it has left me in a very dark and gloomy place.

I know we are all experiencing this together and I know I certainly don't deserve any more or less sympathy, support or comfort than anyone else.

I apologise if I have caused offence to any members, and I do hope I can continue to be a part of your community, but but I just cannot help or control the way those comments made me feel.

LignumVitae

Lou, I think we are in no doubt how the comments made you feel. One post stating it was clear, four were perhaps a little unnecessary.and begins to souled like DD bashing. I don't think many of us fully understand the implication of anxiety preventing you from taking a tablet. That doesn't mean we don't empathise with your situation, I take the liberty of including DD in that collective 'we'. Everybody on here is affected by arthritis and I ask you to maybe consider being a little more empathetic yourself. Please try to understand that many of us, despite taking a range of pills, injections, operations and anything made available to us, are not able enough to work full time or study. We all have significant fears and struggles when it comes to accepting and understanding arthritis and we all have to overcome the problems it presents when making life choices. We all work to support each other to do that. We are all happy to help you do that too so please can you start getting your thread back on track, post about your difficulties and not DD because maybe, just maybe, you should consider that DD too has troubles of her own and deserves some kindness from you, not a constant bashing. If you think I am unreasonable with this post then I can live with that but please consider what I have written. We all have arthritic tribulations or we wouldn't be here supporting each other in the first place.

Lou001

For goodness sake. This is getting out of hand.

DD may have problems of her own and if I were to ever read one of her posts I would be sure to chose my words carefully as to not cause her any more distress or upset. I have problems too, but that is no excuse for being rude to.


I really don't want to get into any further debates about this. Not Only has DD upset me but for some reason now I seem to be upsetting the rest of the forum.

Ps - I work full time because I HAVE to. I'm not in a fortunate situation where I can afford not to, I study because that is part of my employment contract. I was simply telling people my story, NOT boasting or trying to make anyone feel bad!!

Bye all, I wish you well.

Lou001

DD - should you have any issues, I would be more than happy to show you kindness.

Take Care.

[Deleted User]

This thread has now been closed.

It seems it will be impossible for this thread to accomplish the aim of helping Lou001 to overcome her fear of taking tablets.

Lou001, please feel able to start a new thread on the subject if you wish to, as you have said you found comments in this thread supporting I am leaving it in place. If you wish I will remove it from the forum.

Thank you

Mod YEH