Money worries

[Twinkle]

I was only diagnosed with Crohns 6 months ago, but I had to take pretty much that whole 6 months off work as I simply wasn't well enough to go in. I tried to go back a couple of times during that period, but only managed a week to 10 days before something else would crop up and make me unable to work again.

Anyways, because I've been off work for so long, I've now used up all of my sick pay. Which means any time I take off now is completely unpaid. This is now my 3rd day off this week, and I'm panicking. I'm putting pressure on myself to go back to work even though I don't feel well enough to, and whilst I'm scared of making myself worse, I'm also scared of not being able to pay my bills.

My boyfriend was made redundant last January, and although he found another job almost straight away, he took a massive paycut, so we've been living on a pretty tight budget since then anyway. If my salary now starts being docked, we're really going to struggle.

My boyfriend says that it doesn't matter, that my health is most important and that we'll get by. He's even planning to do overtime this weekend to make up some of the money I've lost by taking these sick days. But that's not fair on him. He already does so much for me after work, why should he now have to give up his time to work extra hours because I can't?

I also feel like I'm letting my employers down. Since July, I've tried to go back 3 times, and each time I've lasted no longer than 2 weeks. I'll say hey everyone look I'm back! and then a week later disappear off the radar again. I feel like I am becoming just as unreliable to them as my body is to me, and I hate that. I'm really scared that sooner or later, I'm not going to have a job to go back to.

No matter how sick I feel, it never amounts to the guilt I feel at letting down both my employers, and my boyfriend.

I'm sure the stress of worrying about going back to work, and the financial implications of being off work just make my symptoms worse. Sometimes I think the best thing to do would just be to quit my job and focus on getting better. But if I did that I wouldn't be able to afford to continue renting my flat with my boyfriend, the only option I'd have would be to move back in with my parents. Which wouldn't be so bad, except that they live 150 miles away. If I were to quit my job and move into my parents house I'd not only be leaving a job that I actually enjoy and the home that I'm trying to build, but I'd be leaving behind all of my friends, and my boyfriend too. Most of my life is here in Cambridge, and if I give up and go back to Derby, I can't take it with me.

I already feel like crohns has control over so much of my life, I really don't want to hand over the rest of it too. I guess I just need to win the lottery or something, that way I can quit my job, my employers can employ somebody more reliable, I'll have enough money to pay my bills and heck, I'll probably even be able to get private healthcare. Don't get me wrong, I think the NHS do a fantastic job on the most parts, I just get the feeling things would be quicker if I went private.

Now... if only I felt well enough to leave the house to go buy a ticket... lol!

 

[beth]

Hello Twinkle in Cambridge

I assume you are going to Addies, whilst they are very good there they are very busy and there hands are tied by the PCT - you have to go through all the 'usual' drugs before you can try a biologic. Also the appointment system is utterly crap, the consultants/nurses/etc know it but the administrators do nothing to sort it.

Thanks to BUPA I managed to see Dr Middleton privately although his fee's are not as horrendous as some people may think, it's still I think ~180quid for a first appointment, less for follow-up. His private secretary is on this number 01767 677810 and she'll be happy to talk to you. He's also got a website: http://www.sjmiddletongastro.co.uk. Very nice bloke. It still all takes time.

Sounds like you need to up the ante with your drugs. You can phone the IBD helpline number and ask to see someone urgently because your drugs aren't working/etc. It is: 01223 257212 you'll get an answer phone so leave a message and they will get back to you.

Dont suffer in silence, get on to the docs!

 

[Grumbletum]

I'm in a similar situation and have been thinking I'll have to do something soon. Not got a definitive diagnosis yet, but have a hospital appointment in Feb 24. Have you looked into disability/incapacity benefit? It might be worth giving your local CAB a ring.

 

[Twinkle]

Thanks both,

Beth - Dr Middleton is my senior consultant, although I rarely see him when I go to clinic, I see more of him when I'm an inpatient. I completely agree with you that the Drs and nurses at Addenbrookes are fantastic, but the admin at times leave a lot to be desired.

I definitely need to up the anti with my drugs, 1 was on pred before and due to start Azathioprine soon, but as I had an abscess I had to stop the pred, and although I had it removed just before xmas the docs want to wait to make sure that I'm fully healed from the op and that the abscess/infection hasn't returned before they will put me back on any immune-suppressors.

I called the IBD helpline on Monday and left a message - I spoke with the secretary yesterday about arranging an appointment re: starting the aza, but she said that as I'm currently experiencing pain she'd put me back on the call back list and ask one of the nurses to give me a call, so I'm currently waiting for them. I'm hoping they can offer some advice/look into putting me on some non-immune-suppressing drugs for the meantime - as I'm not due to meet with my surgical consultant (to get the all-clear) for another month yet. I'm really hoping that they don't put me back on elemental, seriously could not tolerate it! Worst week of my life!

Grumbletum - sorry to hear you're in the same boat. It's just horrid isn't it? Yes, our health is the most important thing, but that doesn;t change the fact we need to go to work and earn money to pay our bills like everyone else. It's a complete catch 22. I've not looked into disability/incapacity benifit yet, have you? I think I'm still in denial about how bad crohns actually is - would we be entitled to anything like that?

 

[Rebecca85]

Could you possibly look into working part time? I suffer with fatigue, and combined with the aza and stress I was catching every bug going, the doctor said I needed to slow down a bit! So now I just do mornings and it's great! I bring in just enough money that we're not in trouble financially, I can rest a lot more, less stress, and I feel a lot healthier than I did at the tail end of last year.

 

[Rossy]

I don't wish to pry too much but what symptoms do you have that would keep you off work for so long? I would have thought that the docs could get you on some meds that would help you out.

With IBD, in some cases, it will be one thing after another, and what healthwise becomes normal to you, is unfortunately just how it is, sounds harsh but thats how i deal with it and work when really i know could be off sick, but really whats the alternative. Work is a great distraction and will be good for you.

Of course if you're imobile, recovering from surgery, running to the loo constantly, losing blood, in severe pain then of course you should not be at work but likewise you should be getting the help you need.

Having a job is without saying something you should strive to keep, its not a good situation out there on the jobs front and giving it up may turn out to be something you regret and think about the stress that may come with that.

I'm just trying to get you to think about it from a different view. I know you are relatively newly diagnosed and no doubt this has hit you for six, but really you have to control what is happpening and the Docs should be able to help you with this, get back to them.

Take care

 

[Twinkle]

Hi Rossy,

I know I sound like I'm being a baby and saying "boohoo I feel poorly I don't want to work" but beleive me, its the exact opposite. I'd give nothing more to be able to go and do my job and get on with life, but right now I'm in so much pain I can barely make it to the bathroom - if I could go to work I would, but I honestly don't think I'd physically be able to get there.

As for being on and off work for the last 6 months, it was a mixture of things, when I first got ill I was have 10-15 bm's a day, and my GP said it was an infection that may be contagious and advised me to stay away. A few weeks later I ended up in hospital, and was diagnosed with crohns. This inital hospital stay plus the time it took me to get used to the pred (which at first really affected me mentally, I was so confused and disoriented all of the time, it was as though I had dementia) was about 6 weeks. I went back to work for around two weeks, then I got a perforation in my colon which rendered me practically immobile, so I was off work again, this got infected causing more pain and a seriously drowsy me (I think at this point I was sleeping around 18 hours a day!) anyways, that got better after about another 5 or 6 weeks, and I was planning to go back to work, but then a CT scan showed a 5cm abscess had formed, so instead of work I had another hospital stay. After this stay in hospital, I contacted work about returning, but they referred me to occupational health. Occupational health advise my employers that I should stay off work for a further 4 weeks, until I had completed the antibiotics I was taking to treat the abscess. I returned to work for another 2 week period at the end of November/beginning of December during which time the drs decided to operate to remove the abscess. I had to go off work again for the op plus post op recovery, then my office was closed from the 24th dec to the 4th jan, when I returned. So all in all around 5/6 months off in total.

Believe me, as I'm sure is the case for most sufferers of IBD, I'd rather be at work than at home in tears from the pain and struggling to get to the loo what seems like every 30 seconds, which is why I'm not in my office right now.

My complaint isn't that I don't want to work, it's that when I can't go to work I get myself worked up into such a state of anxiety over money that I'm sure I'm ending up making myself worse. In my first post I was just making the observation that sometimes I think it would be easier to learn to manage the disease, if I didn't have the worry of work. I know, and I completely agree with you, that we just have to learn to live with the symptoms, that unwell is just the normal state of health for us, but I just seem to constantly go from bad to worse, and everytime I think I'm in control of this something else crops up which renders me useless again.

I also know that I'm very lucky, and that many people are much worse off than I am. But it still doesn't stop me from feeling like absolute crap that I'm constantly letting down my employers, and the person who depends on me financially.

Really, I'm just feeling down in the dumps and completely useless again today, and I just wanted to vent my concerns about work/money.

 

[Rossy]

Hey Twinkle, I now feel like a right chump!! You've been in the grinder.

I was just concerned that giving up your job might not be the right thing to do and in time would prove to be more of a stress issue.

You have every right to vent away and i hope things improve for you and i'm sure they will as there will be better times ahead.

However, I would get back to the Docs as they may want to review what drugs you are on, as it sounds like whatever you are taking is not working that well. Have you tried getting an appointment?

 

[Astra]

Hiya Twinkle

regarding your SSP, Statutory Sick Pay, employers pay 6 months at full pay then 6 months at half pay, this depending on time served and National Insurance Contributions.
We pay NI contributions for exactly this situation. Phone DWP, Dept of Work & Pensions, there is a way around this, it used to be called PIE, Period of Interuption of Employment, and they can calculate your contributions, you should be able to top up using Incapacity Benefit.
Also, with Occupational Health, they can offer you a phrased return to work or altered hours, and recommendations, with reasonable adjustments. There is so much help out there, you just need to be guided to the right place. The Citizens Advice Bureau is a good start.
Give them a ring today, get the ball rolling.
xxx