Published on 12, July, 2020
More and more, I'm feeling physically, psychologically and emotionally exhausted with everything. It's a combination of stuff - work stresses, mum's failing health, the lack of support out there (as recommended for me by the psychiatrist who diagnosed my ASC).
Drastic cost-cutting measures at work have led to both an amalgamation and a contraction of services. This means that we're all having to cope with new client groups and a change of working routines. We used to work on a 1-1 basis with clients. But now we've been told we can no longer have additional 'bank' staff, so we have to spread ourselves more thinly and take on extra responsibilities. The pressure to work extra hours is growing. I feel a little cheated, too. They know my caring responsibilities with mum, and that I often need to take time off (as with yesterday) to attend hospital appointments with her. They were very understanding, telling me I could take as many 'emergency domestic' days as I needed. Now, they're telling me that I need to book such days as annual leave instead. With an average of 2 days needed per month, that means I won't have enough annual leave entitlement to cover it and will, at some stage, have to take those days unpaid. A remedy they've suggested - work evenings and weekends to make up the time. Yet they know I can't do those because of my caring responsibilities.
With the extra work pressures now, I often come home exhausted and go to bed early. Or I drink, to relieve the stress and anxiety.
Sometimes, it feels like my life is finally catching up with me - like a tsunami coming in to swamp me and carry me off. I've let go of so much. I used to enjoy healthy eating, exercise, reading. Now, I no longer have the motivation for any of them. I've started to get aches and pains, which I'm sure are psychosomatic.
I'm seeing my GP on Tuesday, though frankly I've no idea what to say to her. She'll most probably suggest anti-depressants, but they've never worked in the past - except to make me feel doped. Driving is a central part of my job, too, and I wouldn't want to risk doing that if I'm on medication. She might also suggest signing me off. To be honest, I'd probably jump at the chance. I feel like I need a break. The problem is, though, that I'd probably not want to go back. Like I said, I enjoy the work. But I feel like my machine's breaking down, and I don't know how much longer I can keep it going.
Maybe this is what happens to so many of us who've been late-diagnosed, and who find ourselves unable to get support for that reason: we've come this far, and somehow survived. But it leaves its mark on us. It's kind of like PTSD - with the trauma being a good part of the lives we've led and the struggles we've had.
I'm also having a carer's assessment at the end of the month. Maybe that'll help. They'll see I'm not coping that well with everything. I'm not sure what they'll suggest, though. If I cut my hours at work to bring me down to an earnings level where I qualify for carer's allowance, that only amounts to £65 a week. It'll make my monthly income less than £800. I can manage on £1,000, but only just. I suppose I'd qualify for Housing Benefit, though. I'll have to investigate.
Sorry... just off-loading. Not looking for sympathy or anything. Days like yesterday, though - and the changes going on at work - make me realise just how tightly-stretched the threads of my life currently are. Something has to give, sooner or later.
CJ115 said:The first thing you need is a sick note! - You are entiltled to one. When you see the GP explain that you do not want to be medicated, this is your choice. If you have some time to recoup you may feel better about yourself.I must admit, I have not read everything above in great detail, but I did notice you say you have been drinking to help. That has got to be a bad plan. Nothing good can come of being in your exhausted state of mind and adding drink to it.The walk sounded good.I can totally relate to the exhaustion if not from a different way round to you; I will try to keep it brief, but it is difficult to make the point without the detail;I used to work 60+ hrs a week, my husband about the same. 2012 Jan. my husband had a heart attack and triple bypass (46 days in hospital due to major post op internal infection). Bang - I became a carer. My three year old (Jane) was a very very difficult child and everything took ten times longer than it should. I had to sell our house as we both lost our jobs (technically I resigned, but basically pushed (I was stupid!) I had to move us into rented accomodation, packing and moving everything when my husband as in hopital.It took my husband one year to recover and during this time we chose to have our son, just after he was born, my husband was diagnosed with oesophageal cancer. I now had a difficult 4 year old, a new baby and a husband on 9 weeks seriously intense chemo followed by an Oesophagectomy and another 9 weeks chemo. He started at 15 stone and was by the end of these few months just 6.5 st. He soon needed 5 weeks solid radiotherapy, during which his mother passed away. My husband's only sibling lived about 400 miles away and left everything to me. Their house was packed to the rafters and it took me months on my own to sort it out (4 x 8yd skips, plus loads of other stuff!). My husband was back in hopsital with a giant kidney stone and emergency bowel surgery. I had to sell the house as that is what his brother wanted, he just wanted his money. We had wanted the house - but couldn't raise the money quick enough. My daughter's behaviour was increasingly bad and I was now pursueing the Autism diagnosis which I had believed she had needed since she was one.My husband had a further two lots of chemo and thanks to his mum we were able to purchase a proprty of our own. It needed lots of work, so I have built the kitchen, the bathroom (mostly), ripped loads of stuff up, stripped walls and loads of other things. My husbands health deteriorated and he couldn't take anymore, passing away in May 2016.About 10 days ago, I received the diagnosis confirmation I had been waiting for, my daughter is Autistic. (she also threatened me with a bring earlier on, so that was great!)Stress, exhaustion and tiredness are very much part of the package as a carer. I do not know what your day to day difficulties are for yourself, but it must be difficult and I really do feel for you.I damaged my knee a couple of years ago, pushing my son in his buggy and pulling my husband in a wheelchair. I couldn't walk for nearly eight months. But there was only me to do it, so I kept carrying on. I finally had surgery in July, but I still can't walk properly yet as it is taking forever and a day to heal!You must get some time off work! Get some help from anyone who will offer it. I didn't really have that option, and felt no one was really there for me, I was completely alone.Things are becoming a little easier for me, but I would give everything back again to have my mother-in-law and husband back.I still don't sleep well, generally a 3am person, but then I wake up late to take the kids to school. Every day is a difficult battle, but I am hanging on in there and you must too.You don't have to have a diagnosis of something to find life hard. A carers life is difficult in itself. You must get that sick note (ask for one month), they might give you two weeks. Don't forget, you are entitled to sick pay!I once worked at a company where one member of staff always had their days of and every sick day they were entitled to every year! At least your reasons are valid.You are sleeping all day because you are probably tired! - this is also very normal!Keep us posted how you get on, sorry for the ramblings, I only have children to talk to.I noticed mentions of claims?If you have a diagnosis you should be entilted to PIP. If you care for someone, they may be entitled to PIP and your carers allowance. Also (a strange one here!) but if you are entilted to PIP then dependent on your mums needs, she may be entitled to carers allowance for you! (I have heard of several family members all receiving PIPs and Carers for each other becuase they do different things for each other.) I can explain more if you want?I only know as we had spent years not being entitled to things and finally had help with claiming.like you said, housing benefit is good, ESA (employment support allowance) and PIP are seperate. you may also be entitled to council tax credit. Also if you do decide to claim, explain you want them backdated. REASON - you were not aware you could claim. We were rebated over £4k in a time when we had every bill owned for months. I actually broke down and cried. It is very possible to live on benefits and drive, especially if you do not smoke.We were very frugal, but we had enough money to pay all of our bills and have two children. As soon as my youngest is older I will go back to work, but he is only 3 and too be honest I need a rest!Sorry, still rambling.Take care, hope you feel better soon.
The first thing you need is a sick note! - You are entiltled to one. When you see the GP explain that you do not want to be medicated, this is your choice. If you have some time to recoup you may feel better about yourself.
I must admit, I have not read everything above in great detail, but I did notice you say you have been drinking to help. That has got to be a bad plan. Nothing good can come of being in your exhausted state of mind and adding drink to it.
The walk sounded good.
I can totally relate to the exhaustion if not from a different way round to you; I will try to keep it brief, but it is difficult to make the point without the detail;
I used to work 60+ hrs a week, my husband about the same. 2012 Jan. my husband had a heart attack and triple bypass (46 days in hospital due to major post op internal infection). Bang - I became a carer. My three year old (Jane) was a very very difficult child and everything took ten times longer than it should. I had to sell our house as we both lost our jobs (technically I resigned, but basically pushed (I was stupid!) I had to move us into rented accomodation, packing and moving everything when my husband as in hopital.
It took my husband one year to recover and during this time we chose to have our son, just after he was born, my husband was diagnosed with oesophageal cancer. I now had a difficult 4 year old, a new baby and a husband on 9 weeks seriously intense chemo followed by an Oesophagectomy and another 9 weeks chemo. He started at 15 stone and was by the end of these few months just 6.5 st. He soon needed 5 weeks solid radiotherapy, during which his mother passed away.
My husband's only sibling lived about 400 miles away and left everything to me. Their house was packed to the rafters and it took me months on my own to sort it out (4 x 8yd skips, plus loads of other stuff!). My husband was back in hopsital with a giant kidney stone and emergency bowel surgery. I had to sell the house as that is what his brother wanted, he just wanted his money. We had wanted the house - but couldn't raise the money quick enough.
My daughter's behaviour was increasingly bad and I was now pursueing the Autism diagnosis which I had believed she had needed since she was one.
My husband had a further two lots of chemo and thanks to his mum we were able to purchase a proprty of our own. It needed lots of work, so I have built the kitchen, the bathroom (mostly), ripped loads of stuff up, stripped walls and loads of other things. My husbands health deteriorated and he couldn't take anymore, passing away in May 2016.
About 10 days ago, I received the diagnosis confirmation I had been waiting for, my daughter is Autistic. (she also threatened me with a bring earlier on, so that was great!)
Stress, exhaustion and tiredness are very much part of the package as a carer. I do not know what your day to day difficulties are for yourself, but it must be difficult and I really do feel for you.
I damaged my knee a couple of years ago, pushing my son in his buggy and pulling my husband in a wheelchair. I couldn't walk for nearly eight months. But there was only me to do it, so I kept carrying on. I finally had surgery in July, but I still can't walk properly yet as it is taking forever and a day to heal!
You must get some time off work! Get some help from anyone who will offer it. I didn't really have that option, and felt no one was really there for me, I was completely alone.
Things are becoming a little easier for me, but I would give everything back again to have my mother-in-law and husband back.
I still don't sleep well, generally a 3am person, but then I wake up late to take the kids to school. Every day is a difficult battle, but I am hanging on in there and you must too.
You don't have to have a diagnosis of something to find life hard. A carers life is difficult in itself. You must get that sick note (ask for one month), they might give you two weeks. Don't forget, you are entitled to sick pay!
I once worked at a company where one member of staff always had their days of and every sick day they were entitled to every year! At least your reasons are valid.
You are sleeping all day because you are probably tired! - this is also very normal!
Keep us posted how you get on, sorry for the ramblings, I only have children to talk to.
I noticed mentions of claims?
If you have a diagnosis you should be entilted to PIP. If you care for someone, they may be entitled to PIP and your carers allowance. Also (a strange one here!) but if you are entilted to PIP then dependent on your mums needs, she may be entitled to carers allowance for you! (I have heard of several family members all receiving PIPs and Carers for each other becuase they do different things for each other.) I can explain more if you want?
I only know as we had spent years not being entitled to things and finally had help with claiming.
like you said, housing benefit is good, ESA (employment support allowance) and PIP are seperate. you may also be entitled to council tax credit.
Also if you do decide to claim, explain you want them backdated. REASON - you were not aware you could claim. We were rebated over £4k in a time when we had every bill owned for months. I actually broke down and cried. It is very possible to live on benefits and drive, especially if you do not smoke.
We were very frugal, but we had enough money to pay all of our bills and have two children. As soon as my youngest is older I will go back to work, but he is only 3 and too be honest I need a rest!
Sorry, still rambling.
Take care, hope you feel better soon.
Hi CJ,
It's humbling to read what you've written here. I honestly don't know where you've found the strength to manage all of this. To say that you need a rest is an understatement. All that loss, pain and suffering - and somehow you've found the resources to get through it. I'm truly sorry for your losses.
In comparison, what I'm going through feels almost insignificant. But we all bear these things in our own way, and some have a greater capacity for coping than others. Personally, I'd have buckled a long time ago with what you've had to deal with. But I thank you for your time and understanding with this.
Until I had my diagnosis of ASC last year (at age 56), I'd spent most of my life wondering what on earth was wrong with me: why I couldn't either seem to be like or get on with other people; why, in any type of situation involving others (at school, work, and at home), I'd always felt like an oddment or a misfit. I tried to find my way in, but never succeeded. So, since about the age of 6 or 7, anxiety has been my default condition. All of this finally caught up with me in my early 30s, when my depressions started. At the end of my 30s, and following a colossal breakdown triggered by bullying at work, I met the woman of my dreams and we were married. But I couldn't make it work, no matter how I tried. When it ended, five years later, I was adrift again. Since that time (and before it), I've managed on a frugal existence: minimum-wage jobs, tiny low-rent flats, etc. But I've always kept my head above water. My childhood experiences - an alcoholic (though loving) father, lots of disruption and moving around, lots of living on the breadline - left me with a pathological fear of debt and insecurity. So I've made adjustments to my life along the way, ensuring that I've always been able to keep in the black, no matter what. This is why I can happily get by, as I do now, on a yearly net income of under £1,000 a month. I have no luxuries or holidays, but I manage to pay the rent and all bills without recourse to benefits. The only time I've ever claimed anything is when I've either been unemployed, or off work due to ill-health. Don't get me wrong, though - it isn't about anything as silly as pride. I'm glad the welfare system is there for people who need it, and for me if I need it. I'm more than happy to pay my taxes to support it. One of the very few things that makes me proud of this country is our welfare system. I leave the tales of 'scroungers' to the fantasies of right-wing tabloid paper editors and their readers.
In 2010, as a result of both work-related stress (I was working in care and witnessing awful abuse, but didn't know what to do about it) and a difficult relationship with a controlling and manipulative woman, I had a suicidal breakdown. All I'll say is that I was lucky to survive it. Since that time, and until 2 years ago, life has been precarious: a long period on ESA, drink problems, difficulties in getting back into work. I did some voluntary work for a while, then secured a part-time job in a supermarket, then managed for a while working from home. Then, in February, I managed to get back into full-time work again - and once again, in the care sector, working with learning disabilities. I love this work. It has kept me grounded until now. But recently, as detailed in my original post, I've been struggling with it. It's a combination of stuff: my mum's failing health and my care responsibilities towards her, work stresses with routine changes and with having to deal with challenging clients... and my life feeling like it's finally catching up with me and overtaking me. I feel like I'm just going through the motions, and barely coping with it. This may sound silly, but if it wasn't for mum and for my cat, I think I'd crash. My responsibilities keep me going. But I'm beginning to feel that I'm losing my grip on those, too.
On Friday, I went with mum to the local MH hospital for an initial assessment regarding her rapidly-increasing (since last year) cognitive impairment. Apart from that, we had a good day. I took her to lunch afterwards, and came home feeling a little more settled. Over the weekend, though, she became ill again. Yesterday, she rang me as I was on my way to work to say that she was feeling unwell and was calling an ambulance. I took the day off to be with her. She didn't have to go to hospital in the end, but was poorly all day. I helped her with her meds, prepared her some meals, etc. When I left her yesterday evening, she seemed settled. Today, though, she rang me again. She was feeling worse. More diahorrea - plus the start of a rheumatoid flare-up. I called work again to say I wouldn't be in and went around there. Again, an ambulance was called. Again, they've left her at home and we're waiting for another visit from the doctor.
From one day to the next, I don't know what's going to happen with her. Her health has been on a rollercoaster for some time now. I'm going back around there at lunchtime to get her some food and check on how she is. I'm feeling torn, though, between my caring responsibilities and the fact that I have to work. I can't keep taking time off. I need to sustain this employment. But I can't turn my back on her. Like I said, she's all I have left, really. My brother does what he can, but he's away on holiday for the next two weeks, and he has his own problems with his wife (just diagnosed with a serious heart condition and awaiting surgery).
I'm seeing my GP this evening and will do as you say, because I think it's the only way I'll be able to manage. But I haven't been in this job long, and will only get full pay for sickness for 2 weeks. I don't have any savings, and can't - for my own mental well-being - afford to fall behind financially. I'll follow up on PIPs, as you say.
I've always managed before. But now, I'm struggling to manage. I don't want anyone to come along and bail me out - basically, to surrender - but I may not have any choice soon. There's only so much all of us can take. And I'm no longer sure where my limit is, or how close it is.
Thanks again for your thoughts and regards. I hope things turn out well for you.
Tom