If you were me would you go back to work?

[mushroommummy]

I have a fibromyalgia, ADHD, Pernicious anemia and endometriosis and depression all of this leaves me feeling extremely tired. I find it difficult to walk and often need to rest if I walk a short distance and get very out of breath & I sleep most of the day, I have pains almost most of the day and getting up on the morning is difficult. Due to all of this I was signed off work from a fairly active profession as I just couldn’t keep up physically with the job.

I was off for three months, had surgery for my endometriosis & eventually received UC & PIP & left work permanently about a year ago. Since then I’ve had a further surgery & two Iron infusions (which I receive every 6 months). My endometriosis hasn’t improved much at all and I’ve decided that I would better going privately for the surgery with the possibility of having a hysterectomy.

Heres my where my dilemma comes into play. We don’t have much spare cash as we depend on my benefits and husbands salary. We get by but it can be tight at times especially when major things like car repairs come up and haven't had a holiday in a few years. If I go back to work it would have to be full time because I would need a full wage to pay for the surgery (no chance of health insurance through work as it would be a basic job) however I am petrified that if I return to work I won’t be able to keep up even with an office job where I wouldn’t be moving around much. If it didn’t work out and I had to leave again I would be facing a very difficult financial situation as applying for benefits would take up to a year again.

Has anyone any advice? I don’t really have anyone to ask apart from DH and he says he would be worried about my health but understands if I feel I need to go back to work. Also we have two kids aged 10 & 8 who enjoying having me around to do school/Clubs/homework etc with them.

At the minute I am completely confused and don’t know what do to for the best.

If you sleep most of the day, is it realistic for you to work at all?

Have you discussed the possibility of a hysterectomy with your NHS consultant?

I don’t know, but I feel like I don’t have a choice. Consultant is reluctant to do a hysterectomy because I am quite young (33) and the waiting list is 3 years here. I just want it done so I might feel a little better and have some sort of life. Plus I miss the extra money and worry about a future with a small pension and staying in the same house forever.

Are you sure a hysterectomy is the only option for your endo? I ask this as someone who had a hysterectomy for that reason, after other options had been exhausted - but I was a bit older than you, at 42.

I think you're making the right choice to go back to work for the sake of your mental health, but this can't be at the expense of your physical wellbeing and from what you say, you don't sound well enough to work full-time at the moment.

Would a part-time job be an option - it might take you a bit longer to save for surgery, but I am assuming if you are managing on one salary, you can throw your whole net wage at it for the time being?

I don’t know but just sleeping all day sounds like a miserable life. I’d need to go to work and have some form of a life. You can get PIP and work. Sounds like you need to be part time and get top up UC.

I’d press your consultant to go on the waiting list. Her/ him being ‘reluctant’ is not the same as a definite No. if you can save for a private operation in the meantime, you can come off the waiting list.

Maybe a part time job. I work for local government and can work my hours as I choose pretty much, which may suit you. And of course there is a salary linked pension.

Otherwise, would some sort of zero hours job suit where you can choose when to work?

Part-time jobs are in short supply around here as are all jobs to be honest, we are in rural Northern Ireland and it’s 40 miles to the nearest city. With PIP and UC I am bringing in around a pT wage I think.

Re the endo, I haven’t been offered anything else at all. I have the surgery then never hear from the doctors/surgeons again until I go back to restart the process. I did have a private consultation and it was much better and in-depth and that’s why I was considering that option.

It’s a tough call…!I just want a normal life I feel like it’s being completely wasted. Maybe that’s just what being sick is like an I’ll have to get used to it.

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@mushroommummy I think firstly you need to try to get your endo under control. I know you said you have had surgery but are you now on any meds to slow down the progress of it? ie combined pill? Does that work for you? Usually it is combined pill, then pure progesterone and then chemical menopause meds wise. That could buy you time with less symptoms/pain until you can have a hysterectomy. Also it might narrow down what is endo and what is fibro for you symptoms wise.

If you returned to work would you then need childcare for your children either before/after school or in the holidays? Financially how much does that cost you over a year?

Could you realistically do a job considering your physical health? The mental load of work will also affect your endo and probably your fibro too. As you can probably tell I have endo. I haven't worked for almost 20 years because I had to accept that my body just won't function. We learned to live off one wage and Dh progressed career wise as I was able to do all the childcare/school runs etc. I am 50 though so a lot older but obviously was early 30s when I stopped working and became a sahm. It is shit and it took a while to come to terms with how disabled I was, it has got better because I can listen to my body so on bad days I can just potter about or sit for hours with a TENs machine attached to me.

I would try to work if you can. I realise that is easier said than done. From an employment point of view it is good to have fewer gaps.

Also, having some more money will really help in practical ways.

So hard, endometriosis is debilitating but a hysterectomy may not be the answer as the endo by the sounds of it could be in other areas, I see you are NI so my advice would be to potentially save for private wide excision surgery, my surgeon was Peter Barton smith (London) but look for wide excision if you can. My surgery was 4.5k

Another poster mentioned the pill are you taking anything to suppress your cycle?

So hard I'd say don't work, you will be exhausted and potentially stressed and from an employers perspective it's going to be tough on them if you have to take sick days.

Whats your skill set? Is there anything you can do remote working, from bed? From home? Freelance?

My endometriosis dictated my entire career as I set up my own business so I could control my own hours and time around my periods.

It doesn't sound like you could physically hold down a job right now.

I think pp is right to get the endo under control if this is the main cause of pain and tiredness. This will help you get back to work to safe for surgery if this becomes the only final option for you.

Go back to the GP again.

Is then any kind of work you can do from home? Perhaps have a look at those roles which could be remote to accommodate for your conditions- even call centres have remote working capability now.

Isnt great you havent had any options re endo - I had the mirena coil and it has changed my life - I don’t have the other issues you have but it has given me my life back and can work.

If you can at least get one thing in control it may help you know what levels you can work with everything else?

I'm in a fairly similar situation. I have had the assessments, and whilst I've been recognised as unable to work through UC it's a rare month we would receive anything as DHs salary is often (luckily!) Too high.

What I do is, I work freelance. I take shorter term contracts and I will work until it gets to the point that I can no longer work. Usually my mental health and physical health are in a terrible state and it takes a couple of months to get back to my normal sort of baseline.

It does however have the upside that I can generally pay for a holiday, or a couple of big transactions, or maybe give us a decent savings cushion.

I am fortunate however that I earn really quite well when I do work.

Is it possible for you to do similar?

I'm not sure if I would personally put myself through the rigmarole of wearing myself down to the point where I can barely function if it wouldn't make a big difference to our financial situation, or provide those big experiences.

Have you also considered the daily cost implications of if you are working? I find that something has to give if I'm working, it's generally a bit of household stuff, and the quality of food we eat goes down...either because I need to focus more on convenience food or, because we rely on takeaways more, which are often £30 a go.

It doesn't sound like you're ready to return.

I have a disability which affects my ability to work and I just do what I can to give time to my dcs and work takes a lower priority for me. I've been able to get max PIP and LCWRA so that helps. Make sure you're claiming everything you're entitled to, we get council tax support as well as other help with bills eg water bills. Can you boost your income, eg do you should have a higher PIP award and are you in the LCW or LCWRA group?.

I'm waiting for medical treatment but it doesn't make sense for me to try to work to go privately. It would take at least a year of working to save enough and realistically I'd end up relapsing and then I'd be useless for my dcs. I just have to manage my energy the best I can and use other therapies to manage my condition until I can get NHS treatment. Sometimes you have to really be persistent to get on the list, and keep checking to see if there are cancellations.

I also think it doesn't help when some people view it as lazy not to work or somehow it sets a bad example to your children. The number of times I have been told about jobs going locally is too many to count despite me never saying I was looking, I have my own car and we don't struggle financially.

I think it is good that there are people on this thread who also have endo or a disability that limits what they can do. It is hard to get out of the mindset of remembering when you were a fully functioning person and now you are reduced to this new version of yourself. I hated feeling like a burden to Dh and not a fully functioning Mum to my children. You need to take time to heal.

Job wise you could look toward the future with the skills you have and whether there is some way to work from home at some point but that point isn't now. I completely understand the whole NHS/Private as that is my own story too but I didn't pay out of pocket luckily I was covered on a health care scheme. You have to be proactive seeking medical care, you can't just wait for them to contact you. As I said above, start with "treating" the symptoms of the endo, a lot of your tiredness can come from that as your immune system is working overtime to rid your body of any active deposits. I did forget to say Mirena coil as part of endo treatment.

Setting aside your complex medical situation, based on this

We don’t have much spare cash as we depend on my benefits and husbands salary. We get by but it can be tight at times especially when major things like car repairs come up and haven't had a holiday in a few years.

you can get by at the moment so don't have to work for financial reasons even if quite reasonably you'd like to have the spare cash.

on that basis can you make a long term plan towards resuming a career, as you're still young at 33 years old, plenty of time to gradually prepare for a job.

• research possible jobs that you can do based on your current skills and any realistic additional skills you can develop
• do an audit of your skills and plan to top up skills using free online courses
• do some volunteering such as admin for a charity that can often be done from home, to try the routine and see what you can cope with
• check websites like Indeed for job descriptions. civil Service jobs is another good one for public sector as they are often the most supportive of people with disabilities.

I don't think you'd realistically be able to go straight into ft work, especially if you have hospital appointments, medical checks etc. you definitely need to plan this out and take your time.

I think this demonstrates that unless you are living it no one really knows how hard just daily life is without trying to also do a job. I only have endo and no one even public sector is going to employ me, I used to work for them before I quit, there is only so far a reasonable adjustment can go. The OP is sleeping a lot, endo, fibro, PA etc all take a lot out of you.

A couple of things to consider re outgoings, any chance of extending your mortgage term to reduce the monthly payments down? Moving house to a cheaper area or downsizing? Moving for your Dh's work to improve job options and maybe he looks to retrain too. All worth looking into. We moved to facilitate Dh's job prospects when it was becoming clear I was going downhill. The relief from endo from the pregnancy was evaporating at that point.

I will try and answer as best I can, re the endo its in/on the bladder area so it can cause issues there too. I was on the combined pill and they took me off it as they thought it was causing other symptoms including increased anxiety.

I've looked for remote jobs but my skill set is limited and again they seem to be in Health care and engineering which I have no experience of. I worked as a PA for a private estate so although my computer skills are ok they aren't great as the owner used paperwork mostly. When I left work I did a diploma in HR online and I am about 1/2 way through that with another year to complete. I sent my CV out to a few of the bigger companies about 6 months ago and was told that I would need experience first.

I've seen a job advertised that is around 30 hrs a week with a salary of £22K. Its local and is office based witch would be better than a local shop where I would be lifting things (which I cant do). We would need wrap around childcare which would cost in the region of £80 a week, then fuel say another £60 per week. Working back from expenses which we have reduced including our mortgage it seems I would be making around £250 a month more that I get from benefits (all at the highest at the moment, I was assessed for those in person and they trawled my medical notes so I am very grateful for that) at the moment after tax.

My main concern as I've said before is my endo, I am fairly certain that another surgery is on the cards and I will have to pay for that as the list is so long. I also want to be able to provide a better quality of life for the kids. We are driving around in a car that was £2K a few years ago and its costing a fortune to keep it on the road as it needs constant repairs. If I was working I could get a small amount of finance for a new car.

DH says we will sit down again tonight and have another look at finances and see if we can tweak anything at all. RE his work, he is in a fairy basic role, average wage but he has been with the company since he was 15 and is reluctant to move as he is treated very well in comparison with other similar roles.

Its looking more and more likely that I will just have to get used to the fact that I can't work, its hard to deal with that, as I was a hard worker and enjoyed working.