Warning this is a long one and might even help you sleep.
Haven’t posted for a while. Looking back I realise I was in a very dark place with PMR, GCA and Fybromyalgia last year. As years go in terms of health 2018 was pretty crap. I’m lucky I’m still here.
I would never have believed I could be in a situation where I might have considered suicide as an option but it loomed at the back of my thoughts every day.
I had lost my job, face, figure and was hugely in debt. Ultimately I had to move back with my mum. At the time this was a horrific thought as my mum and myself are very different and the living conditions were pretty bad as she is a bit of a hoarder and I’m the opposite. However, It was the only option other than homelessness. So I was grateful. Although I was emotionally devastated when I wondered to myself how on earth my life had come to this. I couldn’t talk much about any of it without bursting into floods of tears.
The whole year now seemed like a series of cold hard knocks trying to prove my condition was worthy of financial help from the state and real as far as the medical profession went. That I wasn’t just some lazy so and so trying to leach from the state. Paid all my taxes and NHI contributions all my life and I could get no help in return. This alone changed my perspective of the state of our welfare system. Our apparently invisible and unpredictable condition does not fit neatly into their tick boxes of disability. I was refused assistance and had a long hard fight to appeal through a tribunal which left me financially destitute not to mention exhausted and humiliated.
I won my cases. The tears and exhaustion were worth it as the judge overturned the original decision. I can now get the help I need until I can stand on my own two feet. This alone made a significant difference to my health and mental wellbeing.
I found out by mistake we have access to an OT service. She put into written words how these conditions affect my daily life. Without her clarity of explanation and assistance of letters for the trubunal I dread to think about the outcome. But no one in the medical profession told me about it. I also got myself put on a pilot project of psychological services which gave me sessions where I could discuss the emotional impact of the changes. I had to push for this. I’m now to attend a 6 week course on managing fatigue. The services are still fragmented. GP’s are so rushed they are not looking at the larger picture of what health services to signpost. They could be crucial in someone’s recovery.
Tha backdated money and the help of OT services is allowing me to look at ways to incrementally return to some kind of gainful employment. I’m 55 without pension provision until 67 (at the moment) so it’s not an option. However, it won’t be at the hands of some bully boy employer who caused the trauma which led to this condition in the first place. I’m looking to participate in something I love and had previously trained to do. When I am engaged in this activity I am symptom free and don’t feel exhausted after due to the happy chemicals it gives. I have a fabulous opportunity to try out hours and work things round my health. I have a way forward. I will possibly be putting something together for sufferers of chronic fatigue and approaching NHS all going well. You all know what it’s like with one step forward and one step back.
It’s been an uphill struggle which has seen me in the depths of despair. I’ve reduced from 60mg of pred to 10. Tried under the 10 3 times but the emotional devastation caused by it meant I had to increase. I am now going to try with the help of an anti depressant. The pain and stiffness I can deal with but it’s the psychosis caused that wipes out my ability to be present as a human being participating in life.
So here we go with the next chapter. I’m so much better than last year. More lucid, happier, more together and making plans. Don’t get me wrong it’s been a struggle. I still have fatigue days, up days and down days but I’m far more aware of what’s happening and how to deal with it and who to reach out to for help. Including this group (you are all a bunch of moaners according to my ‘previous’ gp) which has been crucial in my understanding of the condition and in the failings of the medical and welfare systems. So thank you all.
I realise that what is missing is advocacy services to help us negotiate the systems and to fight the good fight on many fronts.
And now I need to find the files on reducing from our perspective and not the Ill informed medical professionals round about me. 😁 Now where are those files ......
Written by
Singr
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You have had the worst times and you have found yourself again. This experience will help if you have any future upsets- you know how strong you are to have got through this! I, too, have considered finding a constructive way to share these horrible experiences- I was a counsellor until I retired through ill health last year. I love how hopeful you sound, finding the positive in all this- that you have a chance to choose what you do next. I think there will be no stopping you!
Well done you for finding a way through this disjointed mess we call the welfare system, it cannot have helped your illness. I admire your determination. So pleased you are feeling better. All good wishes.
I admire you for getting through this awful struggle we have...but to go through financial worries as well and having to fight for what you are entitled to....makes me so angry.......yes we are moaners, because we have plenty like the treatment from doctors ect to moan about!.......
Keep looking forward.......you will get there......
I think you will be inundated with other peoples hats, you can add mine to the pile.
You have survived the system against all odds. People always say to me at least you know it's not for ever. That is possibly true but it is a double ended sword as we are always looking for that sign of improvement and are repeatedly being disappointed.. Because this is not considered permenant we do not get offered the support others get. Why can't these things be provided on a temporary basis? A blue badge for the last three years would have improved my QOL considerably I have not been into the local town for years because it is pedestrianised and all parking is on the edge.
I am not very sociable but like to at least nod, smile and say good morning. I "walk" in some lovely places and see people chatting on their phones and not living in the moment. People watch an event now via their phone screen and don't look directly at a view or a cycle race or whatever. If they haven't really lived the moment why bother recording it???
What really disturbs me is watching a young parent pushing a child in a stroller, using one hand, the little one babbling away, and the parent not responding at all, because they are fixated on the device in their other hand.
Yes. It drives me mad no interaction at all with the child. Not quite the same (🐩) but people with dogs do the same. Not controlling their hound while they gossip about something drives me mad.
I applied for a blue badge online and got it as I was in receipt of disability payments. I also applied for a national entitlement card for the bus for free travel and a rail discount card too. After what I’ve been through I’m now making sure that I’m getting what I helped provide for others over the years from my salary.
Well done!! And how heartening for you - even if it is appalling how you have had to pull yourself up by YOUR bootstraps which, as we all should realise, is a quote referring to an impossible task!
I have to say - if any GP told me I was a moaner to my face he'd get a tad more than he was bargaining for!! And he would probably be my ex-GP...
We all know it’s not easy, but you certainly have had a rough time.
Now you are feeling more positive, please don’t leave it so long - your knowledge (hard fought) can and will help others. That makes you special - and the fact that you can help others gives a great feeling of self worth.
'Who was that person last year..' well, you're standing on the shoulders of whoever you were then and looking at all you've achieved against tremendous odds. Be very proud of yourself, something in you was still shining in that dark place, sometimes despair can turn to anger, the right sort of anger that propels you out of the depths. An amazing, inspirational story - may the next chapter be as fruitful, Singr .
I am full of admiration after reading your story, you have done so well! Whilst I was reading, I was wondering, why did you not have Advocacy to help. I worked in Advocacy until forced to retire last year with this illness and many times I have supported people at tribunals, written letters on behalf of, found information etc, the Company I worked for cover the United Kingdom, and work with people with chronic illness among other things. Here in Fife, Citizens Advice can also represent someone at these Tribunals but have no idea if that service is nationwide. If you were to need them again, the name is Circles Network. But again, really well done!
I only found out about money matters well into my illness. I was late Citizens Advice table. That is why I got turned down first time. I didn’t know how to complete the form. It would have been helpful if there was an advocacy tying in at the GP surgery. Lots of people must be impacted by illness. I had told GP that I was going to lose my job as I couldn’t go back there. At that point it would have been helpful to recognise the financial implications and that this would impact my health. A signpost at that time would have been invaluable.
The first thing I do when I get a dwp form is tell them I need extra time. Getting my brain to work and then my hands to write is best done in short spurts. I was moved from DLA and couple of years ago into the new pip system. Without pip and the car it helps me find I would be housebound as i cant use public transport. As you say there should be some recognition of the amount of stress it creates. 3 months of waiting. My family said I did crumble a bit and had a crisis of confidence. I was basically constructively dismissed in 2007 but had neither the will of the means to fight it. I had to take a months pay or nothing. They hadn't made the assessed changes to my office and work place for me to continue. It was a toxic environment for me.
You have done really well to come through this so far. I have been down that dark hole a couple of times and some days its fingernails you are hanging on by. Good luck as you go forward. I hope now when I slide down the dark hole that I remember it's possible to come out the other end- so do you.🌻
Your reply is welcomed. It just reflects a lot about my journey. I am not bold enough to think I won't end up down that black hole again but when I'm out of it I'm noting what is going on and what I can and can't do. I kept being told, "you can't answer the question like that, it will go against you". I quickly realised that the truth is a useless tool where forms are concerned. If you can do an activity at all they feel that then you don't need help at all. Grrr
Yes. Whilst I was still working I was on lowest components of DLA. I applied for an increase to help keep me in work and told "the truth". It was refused. I still Tell "the truth" but based on my worst days or normal day and not my best days. I will probably have a pip assessment coming up in next couple of years now it's reduced to 3yrs. Not looking forward to it but I suppose I have got worse in terms of mobility so you never know. Not looking forward to the stress though.
I have been down the hole a few times I'm afraid. I try and catch myself b4 the light disappears but it's not always possible.
Oh boy - you've been through so much. We all know how awful PMR is, but you've been through so much more... and you've survived! Well done for fighting for what you're entitled to (it shouldn't have to be a fight!). I do hope things are easier for you from now on.
I don't know if people are aware, but Citizens Advice can be very helpful when it comes to benefits advice and help with filling in forms, appeals, interviews, etc.
I volunteer at Citizens Advice. Most people don’t realise it’s a charity and funding is very tight, so lots of offices have been closing, but the web-site is pretty good (citizensadvice.org) and you can run through the benefits checking tool to see what you might be entitled to. (Likewise, gov.org has benefits checking tools).
Depending on where you live, there could be Cit.A. volunteers who will support you at tribunals ( as well as helping you do a benefits check, fill in forms, appealing etc.).
Well done for winning your battles. I remember you at PMR GCA meeting in Glasgow and you were having a terrible time then. So glad you have got so much sorted out now.
I only made it to one meeting. Murphy's law, something happens on the only day it is on 😟 keep planning to go though, it's good to actually meet someone face to face who knows how you feel. Again I'm glad that you have got things sorted out for yourself, now try to concentrate on getting better 😊
Thanks for this great post Singr and with many others here I admire your grit and determination but feel outraged you had to get to such a low point at all. It is clear the changes you are now feeling were engineered mainly by you despite the chaos you were hurled into - very well done !!! - may things continue to improve in all kinds of ways - and yes advocacy is so important !!
Hi Singr,WELL DONE,you really have bounced back.Everyone can take strength from you and see there is light at the end of a very long,slow tunnel.Thankyou and keep us posted.xx
Wish you all good things for the future. Nightmare time you have been through, the way the safety net of welfare system has been pulled away with lightening speed and stealth by this government is truly frightening. Most of us believed as hard working and tax paying people if the worst happened we'd be ok, sadly it's just not true anymore.
glad life now taking a better path and wish you every success and happiness.
Thank you Singr for your post..You really are impressive,so many of us will take heart and inspiration after reading your story of triumph over adversity.Onward,upward and the very best of luck.
Thank you Singr. It can be a lonely old world when you are battling with burocracy with no-one to lead you through the complicated systems, seemingly designed to keep you away. Your strength of character won through and you should be proud of your courage and persistence. Also the knowledge that you now have can be useful to so many others. Keep up the good work!!
Well done Singr. I applied for Attendance Allowance for my hubby who has suffered 2 strokes and a seizure. I registered as his carer and got help with filling in the form from my local CAB who have a Carer's Project to help people in our situation. He now receives the Allowance monthly and that helps us pay for a cleaner, gardener, window cleaner and chiropodist, a great help to us both in our state of health! It has to be reviewed every 2 years to see if you still qualify. Best of luck with your future plans. Marcy x x
From what I’ve read you are a very resilient person Singr, to have made it through to where you are now. No person should have to go through such struggle, especially while having a chronic illness. Good for you for wanting to help others.
Thank you for sharing this post. I'm sure it will inspire others to negotiate the system and get the help they deserve. I hope the rest of your journey with this wretched disease runs more smoothly for you . Good luck!!
Well done Singr for fighting your corner - you certainly have an inner strength others could only dream about.
Do share your experiences particularly re navigating the ‘systems’ - this is priceless for many suffering the same as you but who lack the knowledge and know how to be able to move forward.
The depths of your despair certainly gives food for thought - if only in helping others evaluate their circumstances as maybe ‘not that bad’ in comparison. Poor health is one thing but near destitution as well is quite another story.
Thanks singr. Your post gives hope to those who are suffering, and perspective to those who don’t have it as bad. We all have PMR, but it’s SO VARIABLE. No wonder the medical community is flummoxed by this condition - or should I say “spectrum”?
Thank you all for your kind and supportive words. You had me greetin’ but in a happy way. It’s funny how recognition from people who’ve been there and worn the tee shirt can touch us in that way .
Cheers all. I will post about my experiences and my plans. Good wishes and hugs to all of you.
So glad you took the time to get this down so that we can all benefit from it. We've all been in the depths and have had to pull ourselves up. Thank goodness for this site - you are all life savers.
I can absolutely relate to this post. It is food for my soul, to know that I am not the only person to have felt "Suicidal"!!! On Pred. I have never posted before, but hav followrd this forum throughout my own nightmare with steroids.
The main thing is to make people aware how you feel. I was worried that in a fit of despair I might end up taking further action on the thought. A cousin of mine had committed suicide through medication recently I shared with my family that I was trying to find out what she took. I knew at that point I was really at risk. They then started to believe there this really was a problem. And started to listen and take the situation seriously.
That's OK then - I thought that was probably the case and you weren't at acute risk. Pleased to know that is the case - and that you realised and knew what to do. I think at some point your story needs to be turned into a "What can be done" article. It's been on my mind for some time - and I know we have a few people on the forum who could contribute very useful knoweldge.
Yes thank you. Reduced from 60mg prescribed 26 January 2018. Now on 3.25mg.
Was given them for GCA but they decided that I may not have it as symptoms persisted. I have Neurological issues (Small fibre neuropathy, Fibromyalgia and Arthritis.
Unfortunately Prednisilone has done me more harm than good. I suffered many very bad side effects, including suicidal thoughts, at one stage I asked to be sectioned. I wasnt of course.
I still have origional symptoms, but could never take these "devistating" steroids again "Regardless of the consequences".
The suicidal thoughts only started to diminish once I reached about 7mg.
I am still dealing with some side effects and now the withdrawals, but I am so looking forward to getting to zero.
I know for some people the drug is a "life saver" and I am truly happy for them, but it has caused me and my family over a year of hell!!!!.
Thank you for your concern😊 and best wishes to everyone out there 😊
Yes, I've noticed it's when I try to come under 10mg. I recognise the way I felt is largely a chemical reaction. But I'm more of aware of that. I didn't really have an option about steroids. They were worried I would go blind and I was so worried about that I just said thank you m'am and took them. I wish I had the time to consider alternatives but hey.I hope you get all the help you need.
There are no proven alternatives for preventing sight loss in GCA. Tocilizumab may help many patients reduce the pred dose quickly - but it hasn't been shown to work on its own and even together with pred there are differing results.
Well done indeed.Very best wishes for a wonderful rest of this year.You have done so well.
This group helps us in so many ways we are NOT a bunch of moaners we are sometimes strong and sometimes weak but we ALWAYS hold each other up!
Take great care best wishes to you.
I take my hat off to you,you have had a truly dreadful journey, but now you are coming back into the light,leaving the darkness behind you.What a strong woman you are,it has been an uphill struggle but you are here,and we are so glad to have you back.Much respect and love.x
Well done to find a positive attitude within yourself. Manging fatigue is difficult, I felt good on Saturday, consequently did too much in the garden, and was wiped out on Sunday. Agreed about the silence from the professionals, though the debate between the endocrinogists and rheumatologists looks as if some progress might be made in treating the PMR, but in the somewhat distant future I fear. Try to keep smiling.
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Flare! What was the last dose that I felt good at?
The Big C
Pain around left eye & head pains
GCA or prednisone head noises 
