Hi,
I am currently waiting to see a private CFS specialist tomorrow for an official diagnosis. I work a 40 hour week and forced myself to get on with it regardless of how I felt. I have now run myself into the ground and have been forced to take some time off work. I'm concered over finances as if i'm not working, i'm not earning. My work are terrible and my boss is forvere telling me there is nothing wrong with me and has been terribly horrible when ive had to phone in sick the last few days. I work in Accounts so i know i can get SSP but thats not really going to cover me. Is anyone receiveing any other finanicial help? I am 20 and do still live at home with my parents but I still have finanicial repsonsilities. Can you anyone relate to this?
Lisa
Hi Lisa, i have CFS, initially PVF 17 months. I had to give up my job. All tests say nothing wrong but i feel pretty ill most days and struggle to leave the home, i am only 35 and used to be a triahtlete.
I can tell you you should claim personal independence payment, you can get this even if you work. There is a mobility and daily living components, rates vary but look it up. Taking some time off is probably a good idea. Make sure your GP has ran extensive testing as to what could be causing your fatigue. Make sure you have had an ANA (anti-nuclear anti body test) for lupus as i know some people get CFS when it is lupus. Hope that helps and all the best.
Hi Lisa
Have you tried going further up within the company for help ? I also work in accounts too. Although my immediate boss doesnt quite understand the illness (one of these people who thinks its in my head) she and the HR team allowed me time off and then reduce my hours. I gradually built back up again and they allow me to work flexi time which suits well. I think you need to speak to someone who understands the illness better. The HR manager I spoke too has dealt with a couple of others who had our illness so it was alot easily to sort a plan of action out.
Anyway best of luck
Jimmy
Hi Jimmy,
The issue i've got is that we are a tiny company. Theres only a few of us in accounts and admin, we don't have a HR department or Oc Health so i'm just stuck with my boss.
Lisa
Personal independent payment will take almost a year to get processed .and then the criteria for receiving it is very high.
In the meantime may I suggest step change government charity run financial advice organisation. They will sort out your financiers for you ...they do income and expenditure..and then suggest your best option. They are excellent and all credit cards ,banks etc trust them and will agree to reduced payments , interest stopping etc while you are on sickness benefit ...
Thats a shame. Just don't let him pressure you into working when you are not well. Your health is more important than money or work. I feel for you - to get that at just 20 sucks :-(
Lisa, don't listen to Sally, sorry Sally what you say in nonsense. My PIP was processed and i was paid (backdated) within 2 months. PIP is paid to people with an illness that are in paid full time employment as well as us who cannot work. The minimum you would get would be around £100/month with the maximum being around £320 month. Seems crazy to avoid something you are whole heartedly entitled too as the illness clearly effects your life.
So pleased yours was quick...let's hope things have changed .my. Hubby's assessment took 10 months then he finally got his money after 14 months ....backdated which was lovely . It depends on where you are living ..he only got his money in Jan 2015 ...
But I agree go for it ..we had to appeal and go to tribunal ..but still worth the fight for what you are entitled to.
I totally relate to this, I had a very highly paid job with a lifestyle to go with it and did exactly what you did which is to keep going. I am now on the road to recovery and am sure that it is that huge will power inside me that has got me to where I am today BUT I did eventually have to give in and pacing is the key. I would get enough energy to do my work and that was about it.
Pacing is very hard when you work full time and eventually I saved up enough money to go freelance and get out of all the stress. I then controlled my energy levels and very slowly have been working on increasing it. I had to give it the other day but that days rest really helped.
Have you been in the company 2 years, they can't easily fire you, and is it a big company? If so they will have an occupational health dept. Once you have your diagnosis, speak to them and they will sort you out. The boss will get a huge rap over the knuckles and he can get into huge trouble, along with the company for not taking your health condition seriously.
The other thing to do is look at your financial responsibilities and see if there are any that you can get yourself out of or reduce and certainly don't take on any more. e.g. if the mobile phone contract is up for renew, keep your phone and get a cheap sim only.
Hi Lisa, I do feel for you, I did the same and crashed last Sept, had 4 months off. I'm now only able to go back p/t.
In addition to PIP and speaking to Step Change ( great for helping sort out finances when u got v little income - lots of help available ) I'm also looking into working tax credit in the disability section - I think I may b entitled having looked at the criteria.
I'm also working on pacing, find it incredibly hard to discipline myself so much tho, not easy to take it easy on days I feel ok I find. If anyone has any tips on this id be very grateful. I also attended a fibromyalgia course locally and learned that my parasympathetic nervous system is in overdrive and has been for many years , which I believe has contributed to the fatigue. So I'm now practicing proper daily relaxation - the OT said its a skill to be learned, not the same as ' chillaxing' - and looking into ways to decrease the revs on parasympathetic system and increase activity of the calming sympathetic system! Anyway that's just me! I'm happy to try new things and I'm Defo better than last Sept when I finally gave into going sick ( I strand it out for financial reasons too).
I hope you find this forum helpful,
Take care and all the best.
Hi Lisa, I was also working full time hours before I crashed with a flu like virus in February. I have been receiving SSP and working tax credit. I was told that if I was not in receipt of working tax credit then I could apply for income support to top up my SSP. So that could be a option for you now. My son's PIP took a year to come through too. For myself I am pondering on that one because like you there are times when I have just worked through my CFS, so am not sure that I would be bad enough for PIP.
That's what I keep telling myself, I have to think of me. I just want to go back to being a normal 20 year old who can go out and do things. I enjoy working too so it's just devastating what's going on.
I phoned my local citizens advice shop and they have advised to apply for this and have given me the correct numbers. Hopefully this will help towards loss of earnings and take a bit of the stress off. Thanks.
I have been with them for just over a year. I was a trained dental nurse before but started noticing myself getting tired so entered accounts so I could sit more. Little did I know this was why. The company is tiny so not oc health department.
I've had a look at finances and I am now down to paying all necessary means while I'm off work.
I just spoke to citizens advice and they have informed that CFS is serious and you can apply for PIP. They have given me a number and offered to help me fill it out and send it away. I would recommend looking into it.
Hi Lisa
CFS/ME is covered by The Equality Act 2010
It does not matter on the size of the company they have to comply with the law. A single person has to comply with the law so do not worry too much just yet. If they continue to dismiss your condition reference, the act to them as you can sue the pants of them. ME/CFS is now re-classified by world health org. as a disease not just a condition.
I manage to just about work… it’s a uphill struggle 90% of the time but it’s only with cooperation of my employer that I have been able to carry on to some degree.
You need to contact Access to work it’s a government department as they will arrange to visit you and instruct the employer on the changes they have to make to accommodate you in the work place. (There is funding available to them to cover any recommended purchases)
Please don’t just give up your job and leave due to the employers ignorance of ME/CFS, you can educate them and have things put in place to support you in work, like working from home and flexible starts etc.
I now have a private ground floor office with wheel chair access with a very comfy leather recliner to rest in as and when I need to during the working day! The employer knows I want to work and with the help put in place they get their two pennys worh out of me still.
I have had ME for over 20 years now, and I have given up a few good jobs because of it. Its no fun beinng unemployed with ME as a new employer doesn't really want you because of the ME/CFS. However, a current one has to make changes for you...
All the best.
Yes it could be worth me applying for PIP. However I guess part of my own reservation is the enforcing of having the label of CFS and the worry of not being very employable with the label. You are really young and hopefully things will improve for you soon. I think the income support top up is worth a try as you could get that now as well as SSP.
Hi Lisa, you have already been been given some great advice. If/when your Ssp runs out you can get Employment Support Allowance. You may also be able to claim some element of this if you go part time for a while. The CAB/Access to work would be able to advise you about this. I would urge you to speak with Access to work and get them to work with your employer. I wish I had known about them when I was working. I think from looking back on my own experience you need to remain positive and professional with your boss. Try to put suggestions to him which are generally beneficial to him. Could you suggest that they take on an apprentice? If you were to reduce your hours (40 hours is a lot) and work with an apprentice he might find that the company is better off financially, but also covered if you have further sick time. If he allows you to work from home occasionally there is less risk of work not being finished.
At 20 you should be thinking of building a career and I know how hard studying to be an accountant is whilst fighting this illness, but it is possible but only if you have a supportive employer. If he allows you to study on day release for instance and you have an apprentice you will be able to take on more you your bosses work taking some of the pressure off him.
Obviously you will have to adapt the suggestions to your own circumstances.
Next time, your boss is rude about your illness, remind him that it is a recognised disability and you would ask that he be respectful about it. Again, in my experience, you should document all conversations you have with your boss about your illness. Do this in the form of an email to him with the points you raised and his response.The point being that if you have no HR he will not really have a clue what he is doing and may feel that as you are following a formal approach he will have to lift his game.
With CFS being a disability companies are obliged to look into reasonable adjustments for you, however, the test of reasonableness is what they consider reasonable, not you or Access to work. I work for one of the biggest companies in the world and they would not agree to all the reasonable adjustments my specialist suggested.
If you get nowhere after all the advice on this forum I would look for the biggest employer in your area and target getting a job with them as you should at least get better sickness benefits and a degree of support.
Hope this helps a little.
The problem for Lisa is that if she gets a diagnosis of CFS then if she applies for a new job and the company request a medical form to be filled in she has to disclose it. Now we all know that she should be treated equally but she won't be and she is right, she is making herself unemployable unless she has a skill which is very rare.
A friend of mine recently got a new contract job and he had to disclose how much time he had off sick. He manged to persuade them it wasn't a problem and they employed him, but I bet it was because he was on contract so they could easily give him 1 months notice.
The problem is that the cost to an employer of you being off sick for any long period of time is huge and most companies in the private sector don't want that liability.
What I did was not to tell anyone about my condition and tried not to let it interfere with my work. When it did I made people aware but took it as an opportunity to work for myself so I could control when and where I worked.
I feel sorry for you because it has hit you at the worse possible time. I would suggest that you seriously start pacing and as a minimum I would go to work, come home and then rest until its time to go back to work. At the weekend seriously rest to try and get those energy levels back up. Do you get an hour for lunch? If so, is there somewhere you could go and lie down for 30mins, you could tell them you are practising meditating!! Part of my pacing use to involve lying down on a yoga mat for 30mins doing absolutely nothing.