To be so tired and demoralised and feel like giving up now?

[Livingtothefull]

I have posted re my circumstances previously…have a DS (13) with severe and complex needs, both physical and learning disabilities. He has been through a tough time over the past few years, has had 2 bouts of major surgery which has been traumatic for him and by extension, us (DH and me).

We have been really focused on DS so it is hard for us to prioritise our own well being.

In the meantime I have faced some challenges re work….I need to work to make ends meet and also feel that I really need, as a person, to achieve and to find a niche for myself. have tried to progress in my profession and achieved a MA last year in my professional field (I studied this against the background of DS surgery and aftercare so feel quite proud of myself for this). However this effort has not translated into obtaining secure and long term meaningful work, the most I can do is get a succession of interim maternity cover roles.

I had a long term interim role most of last year which was really rewarding, just what I wanted to do & I learned a lot. Until it came to an end just before Xmas. So now I am trying to get another one…the familiar round of interviews and rejections. I am being asked why I have moved around so much, is it that I don't have any staying power?! As if it has been from choice.

Anyway, I had resolved to have a better 2015 and to try to be optimistic and work towards a better future for us all. My doctor put me on anti anxiety medication, I was all resolved to be positive.

BUT the latest thing to happen is:…

Over the last couple of days I had noticed black spots in my vision on one eye, together with flashing lights at the edge of my vision. I called NHS direct this morning who said I needed to go to my GP straight away which I did, she referred me to the eye clinic the same day.

It turns out, to cut a long story short, that there may be a hole in my retina/it may be detaching from my eye. I have to go back next week, it is likely that I will need surgery.

I said to the doctor, 'I suppose worst case scenario is that I lose the sight in my eye' and she didn't contradict me.

So my set of personal problems are now the following:

If I lose my eyesight, how do I care for DS?

If I lose my eyesight, how do I work? I have to do a lot of exacting work, report writing etc in my work, not sure this will be possible to do any more?

If I can't work then all my hard study and hard won work experience etc will be for nothing.

If I can't work then I can't pay the mortgage, we can't survive long term on one salary.

Added to this I am absolutely petrified about next week's appointment and what the outcome will be.

I am tired of trying to be optimistic and hopeful about the future. I am tired of life being such a massive effort for such meagre returns.

Ooh, good luck re potential job.

No wonder you're overwhelmed ATM. Any chance of visiting the GP to adjust the anxiety medication, or get something to carry you through the next few weeks?

Do you have other coping strategies you can call on till then, like meditation or breathing exercises? Or going for a walk (if that's feasible).

Thanks Pausing, I have recently been put on anti anxiety meds though it may take a little while for them to work.

I try to do some gentle yoga at home though am a little worried that too much movement may make my eye condition worse, although doctor did not mention it. Likewise running which I do regularly (& is a little icy underfoot).

I don't know much baou tlooking after your child but I do with regard to the sight loss. If it is only in one eye you should still be able to drive and use a computer. If you find it difficult to use a computer normally you can get screen readers to help you. Technology means you can zoom into things and use voice recognition and voice over on your phone.

And that is only in the worst case scenario.

You did, despite being under huge pressure, get this checked out on time for your sight to be saved. Good luck OP, have you considered calling a sight charity and seeing what they have to offer, RNIB for example?

Thanks ethelb, your post actually prompted me to have a look at RNIB website and there is lots of useful info there including some about this condition…..will look into what support is available.

I am hoping that my sight doesn't suffer but if it does, having read your post & the stories of those who have posted here, I do understand it is by far the worst thing that could happen.

So I am trying to get a grip….I am ashamed of myself now but at one point I was so scared yesterday at the clinic that I told the nurse I would have to walk out. Luckily she managed to turn me round but I was panicking. I felt the way so many people do at the dentist, I am so squeamish about my eyes.

…'I do understand that it is FAR FROM the worst thing that could happen' - apologies.

Goodness, don't feel ashamed. You're not going to be the only with eye squeamishness, by a long shot. Nurse will have seen it all before and that's just her colleagues.

Thanks Pausing, I feel sick at the prospect of eye surgery but will have to cope somehow (have survived root canal and EMCS, surely can't be any worse than these)

OK have been to the hospital today & definitely need treatment as there is a tear in my retina. I am having laser surgery tomorrow….was offered today but I chickened out.

Isn't that pathetic of me? I know that others have to go through far worse (not least my DS), I need to snap out of this. I know that I am really lucky that it is treatable.

I thought of ringing my DM as I feel like some tlc, but she is elderly & I don't want to worry her….so nothing to do but sit and fret till DS gets back.

My mum (at age 69) had a torn retina last year and had the laser surgery - went in to have it checked as she was seeing floaters, they admitted her immediately, she had the surgery and was back on the ward by 5pm the same day (she said it was great as she didn't have time to think about it!)

I don't think you will know anything about the surgery while it is happening - it's a full GA normally.

My mum had to sit at a certain angle while it healed (depending on the location of your tear you might not have to do this), and 2 months later was on a flight to Australia to visit relatives (with full approval of the doctor). Her subsequent eye tests now show she has better sight in the injured eye than in the other one. To cheer yourself up today, perhaps get yourself some decent audio books - your TV viewing may have to be rationed for a while. Good luck tomorrow!

Thanks maleen, your mum is a lot braver than I am! I am glad it went well for her.

OP I just wanted to say don't be so hard on yourself about being so scared about this. Many, many people have (for example) fear of the dentist. I don't at all, yet I don't think those people are 'pathetic' or 'need to snap out of it'. Likewise I don't think that of you for feeling unhappy about the prospect of having your eyes treated. Try to be a little bit kinder to yourself, you are not pathetic!

Do tell all the medical professionals involved about how scared you are. I was really nervous about some very very minor surgery a few months ago, and the doctors and nurse were really lovely to me. People will go out of their way to reassure you if you let them know that you're feeling particularly worried. (Good job telling the nurse you felt that you would have to walk out by the way, so that she was able to help you.)

Thinking of you OP!

Thank you Steptoe, yes I felt the same about the dentist & I know it is common to feel this way. The consultant today was really good & reassuring and said that it was no worse than having the actual test done…so as I coped with the test today I should be able to cope with the actual surgery. A lot of it is the fear of the unknown.

Hi,

Just wanted to pick up the life coaching you were considering.... I would really recommend registering to be a mentee with aspire. It's free, you are paired with another woman who will help you focus and work out what you want and how to achieve. It's fantastic, have a look at www.aspirewomen.co.uk/foundation/index.php/mentoring

Thank you hannibalism that is a really great link. I will definitely follow up on that.

I am sitting here with a glass (and by no means the first one) of red wine, wanting today to last as long as possible…..trying to prolong today to stave off tomorrow. When I say that I am pathetic, this is the kind of behaviour I mean. Absolutely dreading tomorrow….

Then I have a job interview this Wednesday the day after the surgery.

I found out today that I was unsuccessful for the job I was interviewed for on Friday….I hate to say it but I am half expecting the same for Wednesday. This is the job-hunting experience….the constant and continuous rejections, the 'you are not good enoughs' being the order of the day. The ongoing negative feedback forms a kind of background noise to my (already sufficiently challenging) life.

I am not really by nature as negative as I am making out but this is hard. I wish I could get some critical distance from my emotional upsets.

OP I've had laser work on both eyes for retinal "holes" and my OH has had the same for actual tears. In neither case was there any discomfort at all (except a headache afterwards with all those flashing lights!!) and the job was completely successful for both of us

If you'd had an actual detachment your vision would most certainly have suffered and they'd have had you in hospital fast since this is an emergency. Although holes/tears can lead to a detachment if untreated for too long, I was told the crucial point is whether or not any of the eye's fluid has got behind the tear so that it risked pushing the retina off

Obviously I don't know your particular case, but since they're happy to leave this for a few days it really doesn't sound as if your tear is "getting into trouble" so far ... I'm fairly sure they'll just give you a batch of laser work, a couple of follow up checks and then you'll be as good as new

Oh, and in most cases laser "surgery" doesn't involve being knocked out ... you sit in a chair with your chin on one of those "frames" and after some numbing eye drops they put a large glass lens onto the front of your eye and use that to focus the laser beams onto the retina

The only slightly grim bit is the repeated flashes of the laser; it doesn't hurt but it gets tedious and can give you headache. But of course a couple of paracetomol isn't too much to put up with to secure your sight ...

Thank you so much Puzzled.

It is all done now….so relieved! It is as you predicted….no GA, just eye anaesthetic and glass lens on the eye, followed by the light flashes. The only slightly disconcerting part is being unable to see out of the eye immediately afterwards (because of the intense light) but that sorted out in a few minutes.

I am home now, my eye is a little blurry still but all OK.

I really appreciate you and everyone who has posted here to share my experiences, this has really helped me keep a sense of proportion. I know I am lucky it is not worse. If anyone faced with similar condition reads this I hope it similarly helps them. If I can cope with this then so can most people!

Oh I'm so glad. Hope op has done the trick, and you have full vision again shortly.

I meant….everyone who has posted here to share THEIR experiences

Thank you Pausing, consultant is hopeful that it has been treated in time to avoid any serious sight loss……spots & light flashes are probably permanent but I will learn to live with them!!

This may be long but I feel a (rant) soliloquy coming on:

I got some temp work at the company I worked for previously. Today I was told that they don't want me to work for them any more…..apparently they want someone who can work more independently & requires less support, i.e. at a more advanced stage of their career.

I was told that in some respects I was the most effective worker they had ever had, I just wasn't right for the role as they envisaged it. This is after having worked for them for about a year and never being told that they had any problems with my work.

It was gratifying to be informed that they 'admired me so much' for how I manage to cope with DS and holding down a demanding job role. They 'really don't know how I cope and they are in awe of me how I manage it all'. I suppose they think I will manage it all a little better now I am unemployed & will have more time on my hands.

I must say I get admired an awful lot - by you name it... family, friends and now work associates. Unfortunately, admiration pays for neither the roof over DS head, his food or clothing etc nor my own. I am frequently told that I am a wonderful person, and wonderful people cope easily with adversity and sail through issues such as my only DS trying to punch me in the face, biting me and drawing blood, and calling me a 'f---ing idiot bitch' when I was trying to brush his teeth in the morning. Then going to work as normal and being told I 'seem rather nervous and overwhelmed' and not knowing how to begin to explain why. And realising that I am actually not normal. And realising that it is through not being normal that I am being sacked.

I think that admiration is so so close to contempt, actually. Put me up on a pedestal so that I am out of your line of vision & you don't have to bother with me.

DH told me to put DS to bed this evening, I remonstrated at being ordered around and was told 'Just f---ing do what I ask you'. Swear words from nearest and dearest just ring in my ears these days. That is all I get - admiration and contempt - nothing in between. DH did apologise afterwards and admitted he was out of order, he said that he was just stressed out that DS was so agitated & I had lost my job & that it had all got on top of him.

I have said this many a time before but I just do not know why life must continue to be so damn hard, why it demands so much of me and gives such crumbs back. I look at my severely disabled DS and feel that I have no right to feel negative, but I need to build positivity on something. When will things get better and how can I make that happen?

OP I didn't want to read & run but sadly I don't have any experience or wisdom to offer. Life can be so unfair. I hope things improve & that someone comes along soon to post with useful advice.

Thank you Poppy, I think it would be hard for anyone to know what to post here because there are no answers, I don't see any way of turning things around.

The only advice is to keep battling on which is what I am doing. I have a job interview Monday am so fingers crossed, although can do 1000's of these. Has anyone any advice on how to get my stress levels down? Bearing in mind I can't just pop out to the gym/for a run because I have DS, I am confined to the home & he needs full attention.

I feel so stressed it is drowning out everything else…I know it makes me come across as apathetic. Don't want to seem apathetic on Monday.

I meant 'I have done 1000s of these' (interviews) most unsuccessful. I feel as if my life is a long lesson in not getting my hopes up. Then of course I get bitter & cynical (I am sure it shows) which of course is a major fail. Does anyone have any advice re how to maintain a positive attitude despite constant setbacks? I know negativity is self perpetuating but don't know how to start turning that round.