This might not be the place for this but I HATE what this disease has done to my life and I know many of you will understand.
I’ve never felt so alone. I’ve lost my friends because they just don’t understand the fatigue. It’s like people forget you exist.
I’ve has some hard times in my life, I’ve lost my siblings and father to early death. I’ve lost babies. But now I’m facing losing the love of my life. He can’t cope with my illness and seeing me so ill. He can’t cope with this non-life. This is the hardest thing I’ve ever had to face
I’ve got macular degeneration and am awaiting surgery. OH says we will see how things are after the op - he’s going to support me through surgery.
I’m about to be put at risk of redundancy and then potentially sacked due to ill health if I can’t travel to do the jobs on offer. 20 years NHS service could just end with a goodbye. No redundancy, nothing.
I’m awake at 1 am wondering what all that fight to get well and get back to work was for if I’m going to lose everything I love.
I’ve never been afraid before but I am now. I’ve never felt unable to cope until today and believe me things have been bleak before.
I have never been out of work in my life how the hell will I cope? Yes I’ve been lucky so far but the prospect of ending a relationship and moving to a rented flat on benefits is a bit much to contemplate just now .
How the hell did I get here?!
Tomorrow is a new day wish me luck
Written by
Polly2Cats
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Hi Polly, Im awake too stressed and worrying and just seen your post. I am so very sorry about what you are facing and for all that you have been through. I have no sage advice to offer but I’m sending all the kind thoughts I can muster and thinking of you very much. Significant chronic health difficulties can take a toll beyond belief on our lives - and those we love and who love us which, in my view is at least as hard as dealing with the health difficulties themselves. This is a very supportive community and I’m sure that others will read and reply to your message tomorrow but having seen your message just now I didn’t want it to go unanswered til then. I’m going to sign off now and try to get some sleep but my thoughts are with you I hope you manage to get some sleep too. Nighty night. Xxx
Morning Polly 🙂oh I do agree very much so. Hope you did manage some sleep - I did for which I’m thankful cos - as for so many of us I think - sleep if it comes is erratic and disturbed, and rarely good quality restorative sleep. Thinking of you and sending some virtual sunshine your way 🌞🌞🌞. Kindest wishes, Tillyxxx
I managed two hours! The sunshine came thanks and lit my way. I will survive whatever comes my way get beyond it and be happy again. All that fighting this damn illness won’t have been for nothing xxx
Hello Polly, just popped on in case you are awake and looking in. Sorry only 2 hours sleep for you and hope you managed your day. Glad the sunshine lit your way 🌞. Your words are strong and positive and and that seems to me to give the best possible foundation for moving forward. By nature I am “never mind glass is half empty, I can’t even see a glass 🙄. “ But learning over many years from my husband and his Mum - the happiest, most positive people I have ever known - I feel I’m doing much better at taking the best from every day and finding times of “genuine happy” in snatched moments when things are easier and I’m finding it makes a huge difference. For a long time I felt that “positive thinking” was overrated and meant “pretending” happiness no matter how difficult things were. But I know now from my own experience that it’s more about looking for joy in the little things and small daily pleasures. Sorry I’m rambling now 🙄😏. But what I’m trying to say is I feel sure that your positivity and determination will carry you forward and give you the strength you need. Thinking of you and wishing you a better night. Love Tillyxxx
I am sorry to hear of your situation at the moment, I do hope things get better with time, I am sure you will receive support from our lovely members of this forum.
Would you like someone to speak to? I can provide you with LUPUS UK Contacts who you can speak to over the telephone. Having a chat with a Contact can help reduce some of the stress/anxiety you may have at the moment. If you would like someone to speak to please email me at chanpreet@lupusuk.org.uk or send me a private message via the forum :).
If you need information about lupus and employment, including information about your rights and what support services are available, we have two booklets that you can read and download at lupusuk.org.uk/working-with.... If you need physical copies sent to you, please send me an email/private message.
Thank you for your kind message. On 2 hours sleep I managed a 9 hour day in work (though probably not functioning well). I’ve had a good think and have come up with a plan of action. I deserve better. I already gave the booklets thanks they were invaluable when I returned to work.
Hi Polly you do deserve better! That’s all I have to say, you sound like a wonderful person, who is been dealt some bad cards, and is been exposed to some ignorant people. Do what is best for you, utilize the resources to talk to people if you need to, we are all here for you! Take care and hugs from me to you, Nan
Thanks Nan. I agree I do deserve better. I’ve got my head straight called on family and true friends and have been overwhelmed by the support. I’ve decided where I want to live which will put me nearer to support and opportunities and help with my travel issues. It will be good in the end but a long haul to get there. I hope you are well x
Hello Pollycats, Hope you are better and you sound better. Please do not worry about tomorrow, just focus on getting better today. Anything and everything can happen in the future, who knows. If your partner wishes to go, who knows, maybe you will meet another love who will love you more. You can overcome Lupus. As a person who has long term illness, you may get social housing if money is a problem, or cheaper rent? I am very sorry to hear about the loss of your family. Very sad. Be strong and be strong. You have no other option except to fight for yourself to get better. You can get better. First time in 12 years, I actually stopped my medications and looking to see if i can cope. It is because I always believed i can get better. Still do so. Why not, it is well possible right? with love, L
Totally agree thanks for your kind words. We can get beyond anything. Sometimes a jolt to the norm is hard to take but forces a different perspective. It’s important to remember we deserve the best and should strive to be treated in a way we deserve. Totally possible to be well.
Hi there. I'm sorry and can relate to your life literally just disintegrating around you. For the first time ever, I stopped working. My husband is around, but he's checked out. I was independent and fought so hard to hang on to my career and the people I knew. No they and it are gone. You're right - and it's a sad, harsh reality - but people bail on the sick. Especially the chronically ill with complicated autoimmune conditions. Even the people you thought were your best friends ... family ... coworkers ... spouses. Most do leave, in my experience. So, I feel where you're coming from. And the anxiety must be awful. That being said, I reached out because the lonliness was too much. I found people who also had chronic conditions and disabilities. It's been great have a few of the folks in my life. They just "get it". I do really hope your relationship will mend (if you want it to) and don't ever think you're fully down for the count. The life Lupus gives us is so different. We have to give up so much. But, hopefully we find our ways to better things, people and times.
Thank you! I love your honesty and practicality. I’m going to move to an area where there are more groups and people on the door step. Family close by. I am lucky and I didn’t realise it. Stooopid me. The inner strength had returned (for joe st least) x
I've not got much to add except that it seems that we all have to lose so much..lupus is life changing forever for us n I think we would all walk away from it if we could.. unfortunately we're stuck with it for good.
Loosing friends, employment, social life, is very depressing and that is why we are all here to support and understand each other ..this forum is a life saver literally!!
U are a strong woman..u have been through and are still going through so much..I have a mantra that I say in times such as these...
I AM a warrior
I HAVE the warrior spirit within me
I CAN win through all the battles in my life.
You have got friends!! U r NOT alone honey..and we r all here for u when u need us.. anytime day or night..we don't get out much either..well I certainly don't!
I've worked all my life n now I'm quite housebound..have lost my mobility and have had to move into a council property because I became trapped in my last place..I've now got a lovely bungalow on a nice quiet area on the estate..where they put the disabled people n elderly so we don't get bothered..n yes I'm on benefits too..no other choice..loss of independence is a real big one for me because I'm a very capable woman..even now I get sooooo frustrated when I can't manage to do simple things but when I can do something no matter how small I big myself up and it seems to help. Sending u gentle cyber hugs 🤗🤗xx
Fabulous inspiring words. Thanks for being there. I didn’t realise I have support I just had to ask. Maybe the friends are only around atm for the novelty of the perfect couples breakup but sod it. If they can bring me milk and pass the tissues they will do for now. Biggest regret is it’s unlike I’ll get a rented house where I can take my lovely cat 🐈
Hello Polly. So very sad to read your post... sending you a gentle hug (if thats ok). Goodness you are going through it right now, and so very much in the past... life has been incredibly hard on you.... and continues to be.. but yes, we are all here.. and understand.. and empathise. Well done for 20yrs in the NHS - how hard that must have been, and what a service I am sure you have delivered despite the condition knocking you for six. You are indeed an extremely strong individual... and have given everything you could to your service. So very well done to you!
For background, I am probably older than you (nearly 56!) and have lost my parents now (mum was my best friend - such a wonderful funny woman - so strong!) and my brother is very unwell (lewey bodies and parkinsons at 58 - tragic poor love but he is incredibly stoic and positive.. thats life etc!). Ive tried but I cannot maintain a personal relationship (nothing works any more - ahem - and I sleep all morning with no energy for what a relationship deserves). I couldnt have children.. Im so so sorry you have lost yours. Another hug. And yes, friends..... I have lost my closest oldest friend who just couldnt understand it would seem, or empathise... shocking... and many others... but I guess its hard being around someone who is no longer who they were eh? Someone who drops out of arrangements too often, and isnt sparky any more, just isnt what they need you to be - and really wants to talk about their deteriorating health now and then - for some support! But I was presumably deemed boring at best - and just not present at worst. They arent carers, after all... and so I am beginning to understand how hard it is for them too. My closest friend now has her own health issues... and works in social care so she is full of humour (essential in our line of work eh!), empathy and knowledge. It certainly helps! And another who is a teacher.. also with health issues... not a great combo... but such a strong lady. Also... I have a loving cat!! He just wants my lap and follows me around like a dog... what a darling!
Polly, I do hope you contact Lupus UK as Chanpreet offered - Paul at Lupus UK helped me at this time last year when I was so very down and hopeless.... The support and information they can give you is immense. It was like a life raft for me to climb onto... as is this site which he recommended. What would I do without everyone? Re your work......... goodness that sounds awful. They absolutely CANNOT sack you, surely. What have you done to deserve that.... Have you gone to the Union? If youre not a member you can join and get a huge amount of support... please do. Just pick up the phone and call them today... please. If its helpful to tell you, I am going through ill health retirement via occ health right now... I just cant manage to work (in Social Care) any longer... its just absolutely undoble with the amount of (or complete lack of) energy, cognition issues and ongoing pain and related issues. Unison will be helping me as I have no one else to help me - and that is what they get paid for...... to help us with our rights. And you have rights that are not being met. You deserve to have support through this so please get on to them today if you can and get the process moving..... You will be so glad you did. I know the recommendation from my Rheumatologist is waiting for me on the mat downstairs... I just heard it come.. I just have to get up and get it. Im so nervous as its so important for the process but I know he is behind me on this. Big question: do you have an NHS pension................................? If you have been paying into it, you could get some monetary help there.......... Another hug, D x
Thanks so much. I agree it’s hard when you become vulnerable. It’s an adjustment that I think I’ve been kidding myself about. I’ve lost my confidence but the core of steel that’s got me thru the past is back. Losing work is hard it’s a big part of life when you don’t have kids (mine anyway). I’m 48 so not far behind you. I’m unsure if I’d get I’ll health pension but if it comes down to it I will fight for it. I’m not sure I’m ill enough but that could just be disillusional me. I am in the union and the trust are following policy to the letter. You’ve made me think though about taking a step back and being a bit tactical it’s time to put me first.
I am sending huge hugs back and positive vibes that that letter on the door mat gives you what you need.
I’ll have a look at that relationship link. Too late for this one but hey you never know - there’s life in the old dog yet! 😉
Hey Polly - thats the way!! Well done you! It is TIME FOR YOU. Indeed.
Dont get pushed around... your work should know better........ the NHS after all?? It generally sinks in when they do a little more er, research... Please, if you havent already, email them the link here... read it through yourself if you can too (Im not sure how much your eyesight is affected yet.. so sorry) lupusuk.org.uk/wp-content/u... This from Lupus UK website is very helpful... however I think you are now on the road to releasing yourself from the daily slog/hell and then some of working with this condition when it gets to the point you have no work life balance at all... just resting or ill - until the next time you can drag yourself into work.. only to become unwell again.. usually (it was for me anyway) within the first hour.. well, actually, I was struggling to get out of bed.. and had been distressed in the night wondering how I would manage the next day. Its not a life... its horrendous when that is your only reality. And then things can get much worse... so yes, it is time for you to pull back and spend time discussing with the union, and read anything you can on here of peeps who have gone through it all... there is a great post on here - Im so sorry cant remember her moniker... but if you search for ill health retirement or work retirement it will pop up... hang on.. let me look... ahh yes it was from fabwheelie - healthunlocked.com/lupusuk/... and it was a link she sent in a post called ill health retirement - on the lupus uk community on Health Unlocked.
Frankly I dont know what the outcome will be for me... I may be left with nothing. I have to try... I was working myself to an early grave - have been off for 2.5mths now due to bilateral foot surgery (40yr old severe bunions and hammer toes - ouch!) which kicked me into flaring terribly but also I was at the last wall as it were prior whilst working with worsening symptoms. My advice, get yourself looking after YOU... if you can get your pension it will be one of two levels I think, on the NHS....? Have you read up on your website the way it works? I just found this... rcn.org.uk/get-help/rcn-adv... - is that relevant for you? And this one : nhsbsa.nhs.uk/sites/default... You need to get to talk to your Rheumatologist urgently ... you can call them surely.. or ask his Secretary to allot you some time. And also your GP - and any other Health clinician in charge of your health issues - so maybe opthalmology etc? Who else is involved that you can think of? Your GP surgery is key too... they have your record of all illnesses and times you contacted them, and who contacted them wit letters etc. Ask your surgery how to get on to Patient Access - I have now and can see my blood tests, my letters from clinicians, every time I called... This is important - you need all their backing ie to make sure they would agree you need to stop working.. It does sound quite possible as you have been off so much... Your body is telling you working is making it unwell... Once you rest up, get a little more stable health-wise... who knows what else you can have in your life... or rather who. You deserve to really focus on you now.. I wasnt doing that... since birth I think...although I have obviously got a little better at it (but not enough). I wasnt brought up that way... it was all about ignoring away any ill health or dis-ease, as my father put it (he was a Christian Scientist so ill health just didnt exist ie no input from Health... was hard) - now it is really time for me to focus on me... and get myself into a much better place... stop abusing my body and mind by continuing to thrash myself by working... it was a kind of self abuse really... if you look at it like that... I just didnt know what to do... until my body screamed at me very very loudly... STOP! And my Rheumy agrees... the letter was good, thanks!
So - I hope this all helps.. This is my (non religious, but absolutely each to their own!!) sermon for today haha... Seriously though... gotta look after ourselves... and reach out for all the help we can.. Have you contacted Lupus UK yet? Youll be so glad you did... they are sitting there waiting for our calls... (well, and a lorra other stuff too obviously ;). Big hug,D
And I meant to say - but was interrupted by my phone in the most important part.. sorry... I meant to say in the relationship bit - that was my decision in the end.. not to have one... but I know Lupus UK has a really helpful page on personal relationships that I shared with my chap when it was all getting to much for ME... it did help him... so I so hope it will help your big love.. Heres the link lupusuk.org.uk/lupus-and-re... Sorry again ... my rambles sometimes go off on one.. in trying to help xx
I’m so sorry to hear about the various troubles you are facing. These diseases really bring a lot of changes to our lives in every area. It has been a huge adjustment for my husband and I socially. We were serving as missionaries when my illness started, living our dream. We traveled every week and stayed with different friends and made many new ones. Now we are back in the US and barely have any social engagements. I just can’t. It’s very hard on the caregiver as well as us. I know I’ll never understand fully his challenges any more than he can understand mine. I’ve found it’s very important to ask him from time to time how he’s dealing with it all and really listen. This link has really helped us.
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