The inevitable has happened
Posted , 5 users are following.
hi everyone,
sorry for the negative chat but ive got to get this off my chest.
so after being back at work for 14 days i have taken 6 off sick. ive had to come to the decision of going down to 2 days a week as i have not worked a full 5 day week since the beginning of July.
This has not been an easy decision to make, ive stressed myself with different options, on the financial aspects and felt this is the best for me at this moment in time.
The thing is my parents are now stressed out and trying to convince me to continue working and to think of how i'll survive on minimum money. This is more stress i cant handle. Yesterday i had 3 seperate conversations with my parents, then boyfriend then sister All lasting about an hour each and giving the same information to each party with their advice.
But today i have been so exhausted that i only made myself get up to make myself eat.
I cant take on other people's stresses. I know they all want to support me and i love them for it. But im now just too tired to explain how im feeling and deal with everyone elses emotions.
I Miss being the fun me that i and everyone loves.
Sorry needed to get that off my chest.
I hope you're all ok. :0)
0 likes, 19 replies
lori93950 caroline_74621
Posted
do whatever you need to do to get better. theres no point in going to work if you cant make it. i did this with too many appts had to keep cancelling so decided no more appts until im well.
youll just have to move in with your parents or something ! we are sick as dogs here and we dont need any added stress!
and yes! talking to a normal healthy human exhausts me too ! im just on a different level and cant seem to connect with normal people .
hang in there were all going through this nightmare and boy is it a nightmare .
caroline_74621 lori93950
Posted
Hi Lori,
Thank you. I dont like negative chats but think id just had enough yesterday and needed to vent with others who understand what its like and without me feeling im worrying my loved ones.
im not very good at being selfish but think ive got to start a little!
lori93950 caroline_74621
Posted
yes unless youve been through this you would NEVER understand the mental and physical torture it causes. i will NEVER forget this time EVER .... its been brutal .
nyanko caroline_74621
Posted
I get how you feel. I think you should do what you feel is best in your situation. It's easy to say "just take time off to focus on health" but some of the consequences of taking time off completely may be more stressful than continuing to work. It really boils down to how much you feel you can handle, and just be okay with doing your best, whatever your best is given your health challenges.
Explaining to people about my fatigue is REALLY tiring. It's funny because they're all trying to help but end up doing the opposite of help. When I wasn't working, friends and family kept trying to give me pep talks and I had no energy to argue with them. Phone calls from them left me disabled for the rest of the day. It wasn't until my husband started making a point of telling people the specifics of my challenges that they stopped giving me the pep talks and advice that don't apply. Specifics like "she couldn't stand up after trying to get herself ready to go out". Maybe your loved ones need to have a better understanding of your illness and your challenges. Let them know exactly what it is that makes you unable to work on those hard days. Tell them the specifics of your symptoms repeatedly so it sinks into their brains that this is an illness, not a choice, and not a mental issue.
Whatever your loved ones feel, know that you are truly doing everything you can right now. No one can ask for more from you. But, if living on your own gets to be too much to handle, please don't be afraid to lean on your loved ones. They're giving you lots of stress now, but they do care for you.
Sorry for the long read when you're tired. I hope your health improves with the lessened work days. Wish you all the best!
caroline_74621 nyanko
Posted
Hi nyanko,
Thank you for your lovely reply.
As i mentioned to Lori i think i just needed to vent with others who understand.
Ive been told i need to pace my day which im finding Really tough to do when you get spontaneous phonecalls from loved ones but i dont want to plan when i get calls cos thats not fair or fun!
i think i knew the answer about my job before i told anyone so i had it planned in my head and had the answers of all the questions i knew i was going to get!
Take care and hope today is a good day for you.
Beverley_01 caroline_74621
Posted
Hi Caroline,
Yes , it is difficult when those around you can't seem to see what you are feeling and the pressure to work is overriding your need to recover. Trying it out and seeing what happens is a good idea but, has shown you that you're not ready yet.
I 'm just wondering if you actually feel you can manage 2 days? If you feel you can manage some work-that's great but, if you are just pushing yourself, how about just mornings over 4 days instead of 2 full days? If you really aren't ready to go back, go back to the doctor and say this. If you are in UK, get in touch with the CAB to get them to help with any benefits you could be entitled to such as housing and/or council tax benefits. These are means tested but, if all you have coming in is sick pay, it will help ease some of the burden.
Also, go online and print out what cfs/me is and how it affects people for your family and friends. none of us asked for the condition. A friend of mine was full of the same type of unhelpful advice too until they got cfs/me after a virus. It certainly humbled them.
Remember, you come first and your health comes first.
Beverley
caroline_74621 Beverley_01
Posted
Hi Beverley,
It's not just the work that tires me out but the driving and concentration so doing just morning or afternoons will be just as tiring. It also allows my boss to find someone to work the 3 days i wont be. They're running a business so can understand where they're coming from.
I want to atleast try and work just to see if i am able to before saying no all together.
ive been to see CAB where they sat and looked at what i maybe able to claim and this is what led me to my final decision.
Thank you for your help and kind words.
Beverley_01 caroline_74621
Posted
Hi Caroline,
I wondered if you had travel issues too. It's difficult with this condition to work out how much you can do etc. I know in your reply to Lori you write it's not fun or fair to plan phone calls but, it is neither fun or fair to then be exhausted after them. Phone calls used to be really hard for me as I'd stay on much longer than was good for me. I learned the best way for me was to have shorter calls and luckily for me I'm not at the point where family and friends are talking to me about work anymore.
I hope that you manage to work out a way to recovery that works for you and that family and friends can support you with that recovery.
best wishes
Beverley
lori93950 Beverley_01
Posted
yes talking even on the phone exhausts me i try not to take calls in the evening as it gets me all hyped up .
dawn.m caroline_74621
Posted
Hi Caroline, sorry to hear you are feeling this way..i've had ME for 8 years now and Fibromialgia for near 2, so can sympathise with how you are feeling. Up until twelve months ago, i struggled to work 37hrs a week, partly because i didnt want to feel i'd given in to my illness but also for financial reasons. After having many relapses however, and therefore alot of time off work, i had a chat with my family and manager at work. The way i saw it was that the extra hours/pressure of trying to do those hours even when feeling really poory was making me relapse more often and if i constinued as i was going, i was likely to loose my job. I now work 4days (wednesday off) and although that can still be too much...just knowing i have a break in the week has made such a difference. We all hope that our conditions will improve in time, and for some they will, but we have to work on the now! If you need the extra days to recouperate in the week and work are happy to accomodate, take it. You can always up your hours gradually if you feel able in time. Although decisions are ours to make, it doesn't stop family or friends giving their opinion..they feel they have to, just explain the logic behind your decision and how you need time to get yourself well, explain that if you don't you well get more poorly. ME/cfs is not something that can be ignore, you need to use pacing strategies, sort out how to cope with stress, sleep patterns (mindfulness, meditation) .., they will probably not understand this. If you can print off some information for them to read about the condition and managing techniques..this will help them understand. Also last bit of advice, make sure you use your days off as down days..working on the above i just mentioned. if you overdo things at home, for instance, the time off will not help...they're YOU days!
Good luck with everything.
Dawnx
caroline_74621 dawn.m
Posted
thank you Dawn.
Ive only been with this company for 6 months and they have given me more support then the company i worked at for 2 years. Unfortunately i wont be able to increase my hours as they will be employing someone permanantly for the 3 days due to the work load they will be taking on from me.
However i am so grateful that they are understanding and giving me this opportunity.
Hope you are well.
lori93950 dawn.m
Posted
gosh you are doing so well just working ANY days! i can just about make it to the supermarket and literally have to hold on to the cart ! so give yourself a break i think youre coping exceptionally well.
the rest is so important though ... i lie in bed for hours even when im not that tired... as i know doing too much will just set me back.
dawn.m caroline_74621
Posted
I'm so glad you feel work are being supportive and i'm sure you'll gradually feel the benefit of the reduced hours...everything takes time. Just try to spend as much time as possible focusing on you and managing your condition. It's hard but i've changed my diet (vegan), use headspace and other meditation to help with poor sleep, and try to say NO as often as i can. This would never had happened before, i have always done for everyone and still would, but sometimes if i feel poorly i have to look after me.
You'll find the way of managing the condition that suits you x
dawn.m lori93950
Posted
Thank you Lori i do feel like, over the years, ive learnt more about how my condition affects me, but i do still struggle and am in relapse atm. However, they are not as bad as they used to be thankfully. Initially i found it difficult to stay awake during the day like yourself, as i wasnt sleeping, but soon realised that afternoon naps were only making my sleep patterns worse. i eventually limited myself to a maximum cat nap of 20-30mins in the afternoon. As ive mentioned in my post to Caroline, i also used diet (vegan), mindfulness and meditation to help with sleep, pacing strategies and have learned to use the word NO sometimes! If it wasnt for these, which i learned whilst attending a local ME centre, i dont know how i would be.
best wishes x
lori93950 dawn.m
Posted
thats great you have a support system for ME there are so many people suffering . my diet was always super healthy so i was surprised when i got so sick. its been tough with this trying to prepare everything from scratch like i normally do . glad it didnt come back as debilitating ... hopefully after you get mono it will never come back !
caroline_74621 lori93950
Posted
ive learnt a tip with cooking, and thats prepare.
i only buy fresh veg,so will cut them up and freeze them. When im needing onions, peppers or mushrooms they're already done.
i also try and make bulk food, Such as lasagne, toad in the hole etc and freeze that too.
On the days i can bearly move I make myself eat atleast one meal and stick to my usual diet.
I keep some rich tea biscuits by my bedside so when insomnia hits and im hungry during at 3am ive got something plain to eat.
Not being able to walk to the shops and back or parking the furthest parking spot from the shops is what's killing me. Walking was my thing but i know ill get back there
Beverley_01 caroline_74621
Posted
That's a good idea. Preparing vegetables has become a nightmare for me and I struggle like I have no strength alot of the time. I have to ask for help to prepare things and to lift from the oven/move pans. When I have a bit more energy, I make soup that I put in the freezer as it's easy to eat and doesn't take long in the microwave to reheat.
Walking was my thing too and I'd completed a 17 mile walk a couple of months before cfs/me. Like you, I am hopeful I will get there again.
Beverley
caroline_74621 Beverley_01
Posted
When we do Beverley we'll do a charity walk through London for the M.E Association! :0)
Beverley_01 caroline_74621
Posted
That sounds a great idea!