Lupus and having to give up work

OldMotherTucker

Sad to say I've come to the decision to give up work. I have Lupus which fluctuates so wildly it's impossible to manage. 
What really scares me is feeling  so lonely at home all day. And useless - I feel pretty useless right now! The thought of a life on benefits and being dependent on others is pretty depressing. Having been a working, single mum for the last 19 years, this is a real kick in the teeth but the physical and mental strain is too much. 
My life is quite a mess, I've been putting on a front for so long it's really hard to admit to friends and family just how bad things are.

thespiceman

Hello @HelenWF Pleased to meet you welcome.  Sorry about your circumstances.

Understand about some of the things you describe.

You find the community friendly.  Loads of support and information.

Is there anything as a community we can do.  Help you.

I do know am on benefits and it is a struggle and life is not easy.  What helps me every day is the warmth and friendship here.

All of us had similar experiences.  We all share and care.

Understand a lot of issues you have had to deal with.

All the community have time to listen.

Please try to find some help and support.  I say this because I need myself to do this.  I do feel for you.  Talking is a start.  Not easy to explain.

I have mental health and a disability.  Thanks to this community finding help and support.

Take care

The one and only Spiceman

[Deleted User]

Thank you Spiceman! 

One thing that has surprised me over the last few weeks is how helpful and non-judgemental all the benefit staff I've had to deal with have been. There is such a negative view towards the DWP and it's staff, I delayed getting advice and starting a claim. I should have done this months ago!

The worst thing though is how low my mood is. I'm normally pretty positive.Also it's been hard telling my work colleagues and I will start telling my family over the next few days. 

JennysDad

Hello Helen @HelenWF and I'll add my own warm welcome to that of @thespiceman. One of nature's gentlemen.
It is very difficult to get a balanced view of the benefits system and the people in it because, of course, conversations on the subject only really arise from those who have had a bad time. There are far too many of those, of course. I suspect that if one went to any forum on any subject, it is the negative views that would predominate, because we only usually react to things when we complain and rarely get in touch to say 'well done'   Most of the time, in any context, it is only 'bad news' that makes 'the news'.
I hope very much that your own experience continues to be a positive one.
Your low mood is something I think we are likely to be able to help with. You'll find a great many people here in similar situations who will be only to glad to chat with you and who will relate to what you are going through. Some of them - like the spiceman - will be along anytime to meet and talk to you.
Is there a particular reason you've felt it necessary to 'put on a front'? I know we most of us do it, sometimes with good reason, but talking is good if one can do it.
Perhaps you'd like to have a look through our list of forums and see if there is anything of interest to you? It's here.
In the meantime, stay in touch. Others will get back to you soon, and we're always ready to listen,
Here and listening,
Warmest best wishes to you,
Richard

[Deleted User]

Thank you Richard.
 I guess big life changes take some time to adjust to. I also had my driving license revoked which has had a huge impact on me. Once the 'organiser' I now have to rely on every one else and I feel trapped in these 4 walls.

Back in my former life, I was a volunteer support worker for a charity. I was up to date on benefits and services for disabled people but I feel a bit over whelmed by it all. I'm glad I joined this site though. 

Thank you for the welcome and the link.Maybe now I'll have the time to learn how to use a computer properly!

H

thespiceman

Hello @HelenWF Please can I say what you need to do .  You are the most important person right now.

I understand your ill.  Al of us have had illness.  Effecting us daily.

Seek the right information.  Make sure you can adjust to the new way of living.  Be aware help and support is available to you.

Understand you have to access this.  Find correct information to fulfil your needs. 

Always make sure of that.  Do I need equipment and other tools to benefit me.

Any thing else.  Remember small steps.  Goals and aims make it simple and reachable.

Take care

Am here to listen 

[Deleted User]

@thespiceman I am feeling more positive. You never think this is going to happen to you!

My daughter has suggested starting a shared calendar online so everyone in the family can see what appointments I need to get to and what tasks I particularly need help with. What a great idea!

You're so right - small steps!
 

JennysDad

Hello again Helen, @HelenWF and yes, one of the things we hear of frequently is the difficulty in adjusting to a new, challenging and often confusing set of circumstances. You'll find many fellow members who will relate to this.

Small steps, indeed, and time to learn to use your computer better But never forget that we're here and that we are here for you. You matter.
Warmest best wishes to you, always,
Richard

debbiedo49

Hi @HelenWF thanks for joining and sharing . I can identify with your experience a lot except I didn’t listen to my body and it took a traumatic event to force me to leave my job. Luckily I was able to get some severance pay. However, the hardest thing to replace is your sense of purpose. I felt like I was grieving for the old useful me. I needed a lot of time to come to terms with my health issues and then managed to access support in my local area which has been vital. There are lots of free things you can participate in through voluntary and statutory community resources. It took me a long time to accept that there is nothing wrong with asking for help and nothing wrong with having a disability. Once I got over that hurdle I was open to try new things. When you are feeling well, it’s good to do things you enjoy and also that you feel helps you to contribute . For me that was doing voluntary work once per week. You will know this. Volunteering is a two way thing. You give and you receive . It’s fantastic! I tried different things going on with adult education for free. There’s also lots of things you can do online or from home to keep your mind stimulated and giving yourself the satisfaction of setting and achieving goals, big or small. All these things will happen at your own pace when you are ready and there is no rush to start or finish. All the best, D

sandyp196

I understand a little of how you feel. I loved my job. I struggled a lot but I loved it. Having a career gave my life structure and purpose.  I know in my heart I couldn't manage a job right now.  I could never again work full time and all I can do now is supported work and even that's a long way off. 
I hope one day to be self employed but thats a long way off too. Alhough it's good to have a plan. 
I hope you feel better soon. I'm sure your family will understand. 

19tinab81

Hello @HelenWF I had to leave my job in 2014 because of my health. I was a single mum to two boys and struggling to cope. I had more days off sick than I was actually in work. I was a teaching assistant in a nursery, I worked with the most supportive people, except the Head, I’d been to college to get qualified and it worked around my two boys. But I couldn’t do it, physically or mentally. There were days I couldn’t lift my head off the pillow let alone go and do an activity with 32 three year olds. You might feel a little lost at first but find something you like doing like reading or crocheting. The days where all you can do is breathe are the days where you won’t feel awful or guilty for ringing in sick, you can rest and look after yourself. You still have a purpose and you need the support from family and friends. I’m sure that they will appreciate you being honest with them when you feel you can tell them your situation. Kind regards

Pippa_Alumni

Hi @HelenWF, thank you for sharing this with us and so sorry to hear that you've decided to leave work. You've had some brilliant advice and support from our community members, and do remember that you can come and talk to the Online Community at any time, and we'll do our best to help!

thespiceman

Hello @HelenWF Thank you reply.  When we are stressed or get anxious we forget things.  I have done it all the time.  Burnt toast.  This afternoon.  Anyway when we were in another time and place.  Understand it was different.

I used to work had business out the house less than a hour.  Now as I age disgracefully.  See my posts especially the Word Association game.  We all start to struggle and need to adapt to our surroundings.

Same with illness and disability.  No one tells you the rules around illness or disability.  Because we all of us are still learning.

So how to cope.  First thing I always do is what is urgent first.  How can I deal with simple stuff first.  How can I change to the this new way of living.

Now for me takes three hours plus most mornings.  Need simplicity for everything.  Had to change.  Have disability fingers and feet.

So standing not good but I have meals have systems in place to deal with anxieties. 

Did you know your local wellbeing groups often found in Doctors surgeries can advise.  I imagine your condition is not easy to live with.

Use freezer and fridge and stores to adapt to your lifestyle.  Most people have the freezer for their chips and veg.  Plus frozen food.  Mine is adapted with simple easy meals to do.  Soups zip bags labelled.  Simple cuts of meat.  When working had money .  I know now need to budget and meal plan.  Coping methods.

Have things like bread in tin foil labelled.  Two for convenience slices.  Easy quick snack not good into toaster and defrost button.  Simple easy choices.  Try not to worry.  If you worry goes around in your head and stays there and like effects your well being.

Please come on here I be ready to listen.  As will the community

Have diaries or computer meal plans and appointments and anything else.  Red pen for urgent.  I use a diary for housework.  Plan what I can do.  If I can not schedule another day.  Useful tips and tricks all over the forum.  Consider gadgets like blenders, food processors and slow cookers.  To help.

I forget constantly but have recipes and important stuff I know in folders to help me.

Having any illness or disability is a constant reminder.  Every day for me.  I try to cope help myself.  Have gone to support groups.  Have mental illness as well.

I suggest this because the support groups have a wealth of information.  Plus have courses and programmes on a huge number of topics and themes.

Have you contacted the Lupus Association must be an organisation set up.  Sure must be.

Might be worth a google just an idea.  Also the SCOPE advisors.

Hope you be OK.  I do know  we all here to help and advise.  Always ready to listen.

Hope to speak to you again.

[Deleted User]

Thank you again everyone who has made me feel so welcome and not alone. Now the decision has been made to quit work (at least for the time being) I am actually quite relieved - especially after a day like today! My hands hurt so badly doing nothing, I can't believe I able to force myself to get up and go to work in this state!

 On the plus side I have been able to document some of the difficulties I'm having for my PIP reconsideration. My Enhanced care was cut to Standard rate on the grounds that I was able to work! Oh the irony! Thank goodness I still have a sense of humour.
  
@debbiedo49 I could see myself volunteering again at some point.One of my 'faults' in the past has been that I'm better at helping other people than helping myself. I'm going to work on that! 

@sandyp196 and @19tinab81 As a single parent I think I got hung up that working validated me somehow - I didn't want to be seen as the stereotypical single mum! I did a great job with my three kids though - in more ways than any one would care to know so I'm going to remind myself of that more often! 

@spiceman I always brushed off the chronic fatigue and brain foggy aspects of Lupus - thought sheer strength of will could overcome them but, before Christmas, I actually asked my rheumatologist if prehaps I was going senile! Plus all the painkillers don't help.
I used to be very good at helping other people sort out coping strategies and routines - and accessing help so I'm going to approach this as if I'm my own client. I have been coping/lurching from one day to the next - it's not a sustainable plan - no wonder I have piles of bills and my house (I'm so ashamed to say this) is chaos.

I used to look after 4 people!!  Now I can't even look after myself! I was a wizard at budgeting and organising!  I waited on my kids hand and foot!! (Apart from when I was ill - more fool me, I know, but they look after me the same way when I'm ill. I just don't like admitting I'm ill.)

Well,I've achieved a few things today and I have 2 important calls to make tomorrow. I've got 3 phone calls to make and and I'm not going angst, procrastinate or put off making them tomorrow so wish me luck! And 8hrs kip!

thespiceman

Hello @HelenWF Thank you for reply .  Please can I add the most important person is you right now.

Please can I add the wisdom of an old fashioned gentleman is acceptance.

Never easy and hard is the acceptance bit of disability.

I am happy to give you advice and wish you well.

Please may add also try and get much support you can.  Whether from family or outside services.  I say this with all my heart.  In a ideal world you should ring up a council or charity to access support and help.

Unfortunately we live in stressed times and I am afraid if you wish to get the support you need.  It might not be there .  Due to cuts, budgets, funding.

I am one I can cope.  I do not know or want these services.  Yet I have to admit right now and for the last ten years.  I need them.

Especially mental health plus disability as well.  As I age .  Wish right now all of us gents take our advice and help our selves.  Always one not wanting to go the Doctors.  Now my words.  A season ticket to the Doctors.  Not because I need to because I have to.

Have to accept the kind support and love, warmth of my friends.  On this forum.  My favourite ladies and gents.  Who help me and guide me to live and breathe better.

I am guilty as the next gentleman of well will not want this but have to do so.

Please try to take small steps.  Remember you are in control.  Little bits of advice take it on board.  All helps in adapting to your new circumstances.  One day at a time.

Phone calls today.  Try to do a script write down what you wish to say.  Helps me .  
Can get anxious and stressed.  Use Emails can be a solutions for many enquiries.

Simple stuff.  One helps me is to have my Utility company on line.   Having Utility on line.  Means I can Email meter readings.  By way send you reminder to send one in.  Bills all direct debits the important ones.  All banking on line.  Helps.  Also a lot of banks on line have on site advisors.  Either by email or phone.  I used that because can see my statements and my money in and out quickly.  

Good secure sites and helpful.  If emailing a lot quicker than phone queueing.

Also one final point a lot of banks have officers trained in dealing with people who are disabled and other illness.

Understand everything.  Take care am here to listen.  As all the community are

Always in thoughts and prayers.

The one and only Spiceman

tina1888

So sorry to hear about what's going on xxx I was at the hospital this morning getting more tests and the Dr mentioned to me that the findings of a biopsy I had in 2015 was lupus.... no one told me !!!!! They are going to investigate more x I'm a bit scared x

Chloe_Scope

Hi @HelenWF, I appreciate that the decision to leave work must have been a tough one! I am glad you are feeling relieved and I hope this allows you some time to focus on your health and yourself. You previously commented saying you would feel lonely being in the house (which is totally understandable!), do you have any hobbies which could keep you occupied?

OldMotherTucker

Hi @Chloe_Scope. Sorry it's taken so long to reply!  A lot has happened since April - plus I sleep a lot now! No pun intended but the biggest step for me has been accepting the fact that, on some days I have to use a wheelchair. It took a lot of courage to go out in one for the first time. I was deeply concerned how people who knew me might perceive it - the old 'Well, she was walking fine last time I saw her' - type of response.

I haven't lost the use of my legs by any mean, but I was not taking part in a lot of fun stuff because  of the pain and after effects. I wish I could say that I didn't care what people think but I do! Years of being told this is all in my head and I'm over-reacting has taken it's toll.

Also I was worried about WCA etc - I've had to learn how to stand up for myself. I might look well enough some days to go to work but it's not sustainable for me with such a fluctuating condition. It's my choice now not to work I'm prepared to fight any decision maker who thinks otherwise.

I'm still working on finding a hobby but I organised a small charity event for my birthday and I've been along to a Puppy Parent group - playing with puppies is about as good as life gets!!

OldMotherTucker

Excuse the name change - I couldn't remember my original login details.

tina1888

Hi @OldMotherTucker I feel the same this has went on for me for at least 3 years. Some good days some bad. I've felt is this all in my head etc it's not.
I'm not at a wheelchair stage but have thought one day it might help.
I too have worried about people and what they think. 
Anyway sending a big hug to u xx

OldMotherTucker

Just do it!! Next week I'm having a little sess on a Motability scooter as I can not wander around town getting my errands done and, shock horror, enjoying the very simple pleasure of being out and about.