I am totally over whelmed by all the comments I have received, mainly in Facebook groups and so grateful for the lovely things people have said and the kindness of fellow sufferers, many of whom are in a much worse place than me. I have also discovered that some groups have deleted my post, so much for freedom of speech, but I am not going to dwell on that, there is much more kindness and support than negativity.
I want to keep all these comments in one place so am writing them up for my blog, they are anonymous so no one can be identified. It means so much tom me what people have said and I want to have a record of them to refer to on bad days and to make me realise I am not alone with my feelings. I should be in tears from all the kindness, but I am not, I think this is because of a sort of numbness, not because I don’t appreciate the comments and I am so grateful.
Many people have thanked me for writing and say they feel or have felt the same, some have offered advice and some just a cyber hug, every comment big or small is appreciated and I know that for many it would have been hard.
This is very relevant right now
I have given people the chance to ask for their comments not to be shared as I don’t want to upset anyone.
“having read that, it sounds you were or are in a very unhappy or / and dark place, feeling as if anything you try to do is useless and the things you try to do are not good enough –
I think none of us are as good as we d wish we were – we can but try to be the best version of who we are –
being part of a family is more then being useful – it s more then that – I like to believe-
it must be hard to have so much things you could use to craft with and so little energy to use them –
and too to find that no one will see them, appreciate them, or whatever – I know when I made my cardboard art work I thought at first, pffft, where would I store it? only one friend still visits, can t show it – and even if I could –
but it did bring me joy and I did find a spot – whenever I look at it – I find that happy spark be it for a second –
so the point of crafting for me – is crafting itself
the point of getting up – is getting up
you don t sound spoilt, you sound sad, surrounded by what s left and disappointed in what you wish there was right now and that is not there –
“Jane, first of all I can’t imagine why anyone would have a nasty comment, I bet an awful lot of people can empathise – I certainly can! Reading it I just felt so sorry for you and wanted to give you a huge huge hug. To think you have no worth is just awful, your husband clearly loves you and wants to support you however he can. Have you told him how you feel?
Just to remind you,( because one does strangely forget!) you’re in this position because you’re ill, not because you’re lazy or feeble. I think you’ve expressed how many of us feel but don’t voice. Thank you for sharing. Hugs xx”
“Oh Jane, I have tears of empathy and also tears of knowing all of those emotions. It took me a long time to work through it and I’m still a work in progress, but you still have so much worth to the one’s that love you. Your abilities are not how they measure it, it’s your love, your strength to keep going every day regardless of it all, it’s you sweetie. Big squishy hugs xx”
“I too can’t imagine anyone writing nasty comments. Most of us know and understand how you feel. You have skills and talent. This is just a blip and it will pass. I’m sure your husband loves you. I think Cathy is right in that you should talk to him about how you feel. Sending some supportive hugs xxx”
“and the point of having it in writing – we read it – responded – maybe there is some solace in that too?”
“Jane i think my hormones are having a surge on your behalf- I’m welling up at the nice things people have said! Xx”
“sometimes someone writes a post but the comments can feel as if written for you too – we all touch each others lives in ways we cannot foresee”
“I hope you are feeling less depressed today if not Dr can help. Living with limits from health have a huge risk of depression which is what this post seems to drip with. You have achieved things you are wife and mother. But my guess is that the depression cloud too dense at moment to hear any of that. Please speak to GP. ME is enough to face and depression can be treated”
“the point is you are alive and as much as that hurts sometimes it is a gift. You are not a burden to your family, they love you, and would much rather you here in any form than not at all.
Your wheelchair, sticks, etc are important and not an indulgence. As is your craft things, otherwise you would go stir crazy.
I can recommend a few books which may help if you are able to read or listen to them?
But most of all YOU are Important! Don’t give up, life is worth living for xx”
“There is nothing more valuable in this life than giving birth to a child. This alone is worth all the money and time in the world so I disagree with you saying you are a burden on your husband. You have given him something worth far more than anything he can do to support you with your disability You are worth every penny”
“It’s very well written Jane, from the heart, and I think it’s something some of us can relate to. I know while I was reading it I was thinking it could have been me writing it – except not the school run or the crafting, but certainly all the others. Thank you for writing it xxx”
“I think most people with chronic health problems have felt like this at some point. I got round it by putting in the background all the things I couldn’t do anything about and finding some little things each day that I could be grateful for or pleased about. It can feel very silly at first but, if you change your focus from the things you can’t do, you will be happier.”
“I have written a very similar thing or more in my time, different circumstances, especially after my family broke down further, I also write stuff and rubbish poetry and draw stories and consider they may never be seen, may get thrown out at the end of my day…
I still matter, too, sending heart felt hugs your way, if you would like to play, the game of life this day that lets us shy away, to lick our wounded dismay, at the way our dragons slay the dreamer from the fae….”
“There have been many days when I could have been the author of this blog. I too have a house full of craft stuff and lots of projects on the go (including a book) that have not been finished. But when I do finish I get such a lift of joy, just looking at something I made. You probably don’t feel the same today as you did when you wrote this but one thing I have to bring you (gently) to task about is your use of the word ‘stupid’. You are not stupid and if your best friend was ill and disabled would you call her worthless and stupid? Did you want to get this illness? Did you do something deliberately to get this illness? NO! My son was 10 when I got ill as a single mother. Yes, I beat myself up because I couldn’t do things with him any more but as he grew up I found the most important things to him were: knowing he was loved, me having lots of time for him, me listening to him. Yup, that’s all. He grew into a fine young man and we have a great relationship. Sadly he got ill too at the age of 21 but his sense of humour keeps us going. I read an article recently which perked me up no end. So are you worthless, useless and giving nothing? All that craft stuff you bought kept a lot of people in employment. So does all the equipment for the disabled. You buy food, pay for gas and electric so you are keeping people employed there too. It may be your husband’s money paying for it but you are using it. Nearly everything you spend has VAT included so you are a taxpayer. As for your stories it is easy and free to put them on Kindle. If even one person reads them you have given pleasure to them. I would love to read some. I have often felt the same as you but fortunately it doesn’t last. I agree with the person who suggested giving a 5 minute talk at your daughter’s school about disability and bullying, write it out first and try to put a bit of humour in too. I’m lucky that I can manage to get my scooter out the car myself although it’s usually the 2 of us out and we both do it. My scooter instructions say not to use it in the rain – what bloody use is that in the UK??? I’ve been out in lashing rain and it still works, bought myself a raincape from Amazon, a nice turquoise spotty one – no-one can miss me in that. Loads of love, empathy and hugs. xxx”
“Im sorry you feel that bad Jane. Maybe now you’ve written it all down you’ll feel a tad better hopefully. Is your blog closed or secret as would you want everyone reading how you feel? What can you do to feel better? It’s very hard when you feel so down but also very ‘normal’ with chronic illness. I can only suggest you see your gp and let him read the post. Big hugs to you xxxxx”
“I have read this with interest and I have total empathy of everything you are saying. It’s the most horrible way to feel isn’t it? I’m so sorry you feel like this but I totally understand why as I myself question exactly the same. Could you not sell/pass on all your craft supplies? De cluttering really helps to clear the mind and give you a sense of achievement. Everybody needs an outlet hunni so however you do this, don’t stop doing it, you are worth so much than the way you feel and so much more than you think. Family is family because you are in it, without you your family just wouldn’t be so take pride in that and the fact that you are so well loved. Xx”
“I can relate very much to what you have written Jane. The benefit of you writing that particular blog is that you’ve shared your pain and frustration and by sharing you reduce some of those bad emotions that you have been holding on to. It doesn’t matter if nobody reads it, identifying what is causing you stress can be very cathartic.
Are you sure there aren’t benefits you could apply for? They’re not all means tested. Have you ever sought help from Citizens’ Advice?
You have brought a child into this world, a child who loves you and whom you love, that is a wonderful achievement. With the limitations this illness places upon us we are very restricted in what we do, there will be times, sometimes months or even years, when we can do very little but we can still love the people around us. Will your daughter lie on the bed next to you and snuggle in for a while, telling you about her day? That’s a great way of helping her to make a closer bond with you, that will be a good help as she gets older as she’ll know she can trust you to listen to her problems and stories of her successes.
I too have lots of crafting stuff that I’ve rarely used in almost 6 years but some day I shall do and if people then think the cards I make are a bit old-fashioned then that’s tough, I’ll have put more love into making that card than I would sending someone else out to buy a more modern card and that’s what’s more important. I did give some things to a local activity group and sent some bits to the local hospice for them to use in art therapy sessions.
You’re the glue that holds your family together, never forget that. Think of paperback books, the glue is just there, it doesn’t attract anyone to purchase the book, the author’s reputation, the title or the pictures on the cover are the things that do that, but without the glue that book would fall apart. You’re very needed even though you aren’t able to do all the mum things you’d love to be able to do, without appreciating it you are holding your family together with love. It’s the closest bond we can have with other people. Take care. Am thinking of you and sending out positive thoughts that your bonds will get even stronger. Xx”
“Oh my goodness Jane I am soo sorry that you felt compelled to write this. But how brave you are at doing it! you have been able to come out and say how you and all of us feel! Well done! Now we have to try and uplift you hun. Is there anything at all that you and your family are interested in together that you can do or watch that can get you all doing something together whether its a TV program etc? That might help? Please know that we are all with you and know what you are going through. Loads of hugs from me xx”
“Jane I’m really sorry I’m not well enuf to read all that u have written but I understand your feelings of guilt and worthlessness. I too am completely dependant upon my husband physically emotionally and financially. I add no value and serve no purpose. I feel like a blood sucking leech. I buy things to cheer me up that I’m not well enuf to use or wear, then am consumed by guilt. I’ve thought about trying to sell some stuff on ebay but don’t know how. I’ve gave a lot of really good stuff away over the years, but sadly usually to people who haven’t appreciated it. U r not alone in how u feel and I’m sure our husbands don’t view us in the negative way we do. I know it’s difficult but don’t b too hard on yourself. Xx”
“That is my life. Except my kids are adults. I gave my daughter all my craft stuff a few months ago, hundreds of pounds spent on it just to sit there half finished, I was reluctant to part with it because I still believed that one day I’d carry on with it, but when she took it away it was an enormous relief. I no longer had half-finished crafts on my ‘To Do’ list. I also write and I’ve got nearly enough poems to publish a book for children, but it takes brain effort, organisation etc as you know, so that’s sitting in limbo, but I won’t be giving that away to anyone, I need to hang on to the hope that I’ll get round to it. I totally understand every word you wrote and I’ve no idea of anything helpful to say xx”
“We all have lots of times like this. Life is very hard when you have a chronic illness. I’ve just had a cuppa with a friend & moaned for an hour – luckily she did too so no one else suffered and we both felt much better afterwards. Hang in there and eventually your mood will lift. What about doing something positive for someone else? Eg you could package up some of your craft bits to see as stocking fillers on the Sheffield M.E stall at Walkley Community Centre next weekend? It’s tough now, but it won’t always seem as bad x”
“Big hugs Jane – you’re not alone. There’s a lot of people in your boat! You’re not useless, I’m sure you bring a lot of happiness into your familiy’s lives just by being there and being you. Xx”
“understand what you’re saying. Take it day by day. Try not to look back to what you used to do or to far forward. Someone told me that and although hard to do can be helpful when you’re feeling dreadful. Hang in there x”
“It has helped me by reading your blog so thank you and I’m happy for you to use any of my comments xx”
“the plight of me patients is shocking, the abuse from many members of the medical profession, only compounds our difficulties. thank you for sharing this very honest piece of writing jane”
“Oh Jane. Thank you for sharing that. I’m so sorry you’ve been feeling so very low. Sending you hugs.”
“ I hope that you are ok, I’m really worried about you, you sound very depressed. I know how hard it is, just know that there is a point to you getting up every day, there is a point to you using your energy to get through each and every day, she is beautiful and goes by the name of Emily, she needs you and loves you more than you could possibly know.
You have friends that care for you, including me so please see your g.p and tell them how hard things are at the moment. Xxxx”
Oh Jane, I’m so sorry you’re feeling this way.
“Oh Jane, I’m so sorry you’re feeling this way.
“I know you feel like you’re not achieving anything, but I can assure you that you are. It’s likely none of us will ever climb Everest but we can still achieve within our own abilities. Today I made three doctors appointments that I should have made weeks ago. I’ve done it though, and that for me is an achievement, however small it may seem.”
“hugs jane. Im sorry you are feeling so down. Would a different antidepressant work better? have you tried amitryptamine to see if it helps your sleep?
you are still achieving lots, just the things we can achieve are different to other, healthy, people. Even just getting Emily to school and back are huge acheivements for you.”
“Can you ask for a referral to a psychiatrist to review your meds. I was on Prozac for years but all of a sudden it stopped working for me. I had a huge breakdown. Got put on sertraline. A psychiatrist will also be a lot more understanding to talk to about how you’re feeling.
You sound like a lovely caring person. It’s relationships that matter in this world not things.”
“it sounds like you are very low and need to speak to someone. I know it’s a bit controversial but cbt is good for helping challenge these thoughts (at least it has been for me) or there’s a book called ‘how to be sick’ by Toni bernhard which can help in terms of accepting where you are and your limitations. I hope you start to feel better soon x”
“Apart from the disability factor, I could’ve written similar. You’re obviously feeling very low and I hope by just writing all that down you feel a bit better?
Just because you don’t earn any money doesn’t mean you don’t deserve anything. We’re all guilty of buying crap we don’t need, me more so!
I look back on stuff I used to do, even a familiar smell can remind me and I think of all the things I haven’t done and can’t do, or never will…I just want you to realise you’re not alone in your feelings. Other than that all I can do is send those hugs that oddly feel great to receive from almost strangers, as you know we understand x”
“Why are any of us doing anything? Why is a billionaire still working? Why is an artist making art? There are so many why’s…its morbid but we all die and we can’t take any of it with us. None of us truly have a legacy. BUT to me, we do it because in that moment that we are making art, earning money, buying things, taking nice walks, we are enjoying ourselves. The enjoyment is momentary but so is life. Life is just a series of moments and the more good ones we can create for ourselves and others the better, it doesn’t matter if they don’t last, it’s for that moment that it matters.”
“As for not earning the money, I don’t imagine most of us on here do, due to illness, most of us are reliant on others. Or are we? Yes we are reliant on them to earn the money but don’t we allow our partners to work by aiding them in other ways? We are supportive, helpful at home, look after children or pets, or we are just company and a person to lean on. No we don’t directly earn money but without us, our partners probably wouldn’t do as well as they do. After all, everyone needs someone.”
“antidepressants do stop working sometimes. I’ve suffered with depression for 14 years (long before CFS) and have been on all sorts of things for it. Some of them have just stopped working. Others have worked again after being off them for a couple of years.”
“I read your blog, wrote a long piece then lost it has couldn’t remember my google account. But in summary I did say that crafting is therapeutic for you as OT’s say so why don’t you get rid of most but keep the odd one. On the money issue what about PIP? I couldn’t get ESA for the same reasons as you but get it. Regarding money spent on you- your WORTH it! Keep on fighting, take a break and a rest but know we are all there xxx”
“I am so sorry things are so hard. Please remember that you are almost certainly the most important person in your daughter ‘s life. When things are so hard, it can be difficult to take pleasure in the mundane of our child’s life. But each day you take her to school is an achievement. Each time you have the energy to read her a story/ give her a hug etc is an achievement for you, and very important for her. She will look back on these years with admiration and gratitude, when she is old enough to realise all you are going through. Someone suggested to me to try each evening to identify one positive achievement of the day. I haven’t tried, but I believe that if we don’t set our expectations too high, each of us can identify something. I really hope you can”
“I commend your courage and the courage of everyone here to keep going when they do feel like this and I think many people do relate to these feelings. Even carers can feel like this – I think there is a huge amount of worth and talent in you Jane and your crafting blogs are always great to read, but also your honesty in writing these personal blog about your feelings – there is so much point to it if it helps others who when reading it feel less alone and isolated, Massively important. Keep writing keep crafting keep showing us these things they are much appreciated”
“This is so me at times .your not alone feeling this way ,the plus to it all were still alive n kicking ..xc”
“I do agree you have a child you can shape her life. She will learn the value of being free from pain and being able to walk. You have really helped me I have unfinished projects too and so many gadgets to make and prepare food knitting projects unfinished but my comment to you isn’t negative at all because every time you began a new project it meant you haven’t given up trying and that’s the point.Also look at your blog you come across as both intelligent and articulate.
Have you applied for PIP (personal independence payment) You can most likely get someone to come to your house to fill the form in for you and request a home visit from ACAS there are some stories that might put you off but it’s worth a shot. I do wish you could speak to my friend Sarah she would inspire you”
“Keep strong. Things will change over time. Took me 10 years or so to rejoin human race. There is hope. But you are not alone. You are loved.”
In answer to some of the questions;
I get DLA which pays for my motabiity car, will change to PIP when I get reassessed and if they think I qualify. Mobility part of PIP has different criteria for mobility and I might not qualify so will then lose my car. As we cannot manage without a car we would have to buy one or buy the one we have which we would quite like to do and as it is a VW we might get quite a good deal!!! The worse issue if I don;t get the mobility PIP is that I would lose my blue badge, that would mean I would lose my last shred of independence, I don’t even want to think about it.
I have seen my GP, but all they can do is increase my anti depressants and I can’t tolerate that. My nice friendly helpful GP has just retired and others are not very helpful. had an appt the other day to get some of my medication sorted, but not able to discuss emotions etc. Got another appt next week for a test to see if there is a reason my dizziness has got worse.
I take Fluoxetine (Prozac)and Amitriptyline. I increased my Amitriptyline and managed to tolerate that and I am allowed to increase again, but worried about doing that as I have to be ok to drive in a morning, the only time I drive is for school. I tried increasing Fluoxetine but even only a half dose made me really ill. I have tried many anti depressants over the years and most don’t help much, Fluoxetine seems best, but not by any means a cure.
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