Everything I enjoy has been taken away from me forever

Former Member

I don't really know if this is the right place to put this but I've just had a really bad week with everything piling up. I have a rare auto immune disease which has really flared up worse than I've ever experienced this week and it causes a mouth full of huge ulcers so I can hardly eat and my joints swell up and are so painful. So this has been a bit of a bummer. On top of that I have realistically discussed with my mum, psychologist and consultant that going back to my nurse training probably isn't the right thing for me. Problem is that is all I want to do but understand with this disease and my limitations that I would really struggle and probably end up more ill because of it. I have been at uni twice but never got past first year (first time sport science degree then adult nursing degree). I have three good A-levels but have no idea what else I will do with my life now . I can't afford to go back to uni to study anything else so don't know what to do . Currently I am unable to work because of health reasons but I am working my way back up to where I am able to return. As I have good alevels and was always quite academic I want to do something which utilises them but have no idea what. Its really stressing me out as its my whole future which I thought I had planned. Also because of the flare up it has caused me to take a few steps backwards in my recovery and today I had physio and wasn't able to do what I was doing last week. I know this is a temporary step back but when I already felt really down it didn't help at all as I see it as two steps forward and three steps backwards.

On top of that I was going to go back to playing hockey which I love when I was fit enough to. I'm on blood thinners so this could be dangerous but it was discussed and people thought I would be okay if careful. I wasn't at the match but last Saturday one girl who plays the same position as I do got a ball to the head and was in hospital for 48 hours and had to have loads of stitches. This is dangerous for anyone but if it happened to me, as I would bleed more, its potentially life threatening. This really scared me and I don't think I should go back to playing as the risk is too high.

So I feel like everything I enjoy in life is getting taken away from me and its making me feel really upset. I have stopped cutting (for over 2 weeks now) because of my girlfriend which is amazing and I don't want to cut so know that's a positive but I still feel no better. Sorry for the long moan I just don't know what to do.

Former Member

Hey lovely :wave:

I just wanted to offer you massive hugs *hug* I can't imagine how hard it must be for you and I wish I could make everything better.

I know this probably isn't what you want to hear but I think you've made sensible decisions. You're safety is the most important thing so well done on looking after yourself.

You say that you feel like everything you enjoy is being taken away from you. Okay, so you can't play hockey and you can't do nurse training, which isn't great and I really am sorry about that, but what about the things you can do?

I know it's not the same but remember when you thought you would never be allowed to have a tattoo? Remember when you thought you would never run again? Remember what you're training to volunteer as now? If I remember rightly, didn't you ride a horse for the first time in ages not too long ago? Like I say, these aren't the same things, but all these things you thought you would never do again, you've done. Look how much progress you are continuing to make LC! It's amazing, you're doing so great!

I honestly think that one day you will find someting new that you're as passionate about, and I truly believe in you. I'm still looking into that thing for you so I will tell you more when I find some more information.

Also, really well done on not cutting for over two weeks! That's amazing progress Loz, you should be really proud of yourself.

Hugs and loves

Former Member

I can't offer much advice but some solidarity - I'm in a very similar position and have lost a lot of my freedom because of my illness and I'm now at a point of working out what the hell I'm going to do with my life. I don't really know yet but I'm here if you want to talk

Former Member

Miss_Riot wrote: »

I can't offer much advice but some solidarity - I'm in a very similar position and have lost a lot of my freedom because of my illness and I'm now at a point of working out what the hell I'm going to do with my life. I don't really know yet but I'm here if you want to talk

Thank you! It is just so hard and upsetting when I thought I had my whole future planned out and now I have no idea :grump: Today I am in a really bad mood. Well not particualrly bad but I just feel like I am going to cry all the time and I hate it.

Thank you butterfly. I am trying to focus on the things I can do but when the things that I got so much enjoyment out of are being completely taken away it is so hard. I think I am going to focus on dressage in horse riding as its something I can do and have a friend who is happy for me to ride and compete with her horse. Its going to be a tough one as I am still not ready to ride properly rehab wise and will depend on flare ups but something I can do which I enjoy. I know I am still doing things but its just my future I am so scared of. I have always been one of these people who likes to know what they are doing and where their life will lead. Now I won't even have a degree so won't get a job that I want to do. Does this mean I am going to be unhappy for the rest of my life?

I just don't even have the energy to cut anymore and hated myself more for doing it so I have stopped which was hard.

eugh everything feels so hard today :banghead: I don't think I will get through the day without getting upset and I hate it so much when I cry! I am in a lot of pain too with this stupid flare up and the medication I have doesn't take the pain away. I am really scared about my appointment on Thursday and have to go alone again Ah well I best just get on with life

Former Member

Talk to your doctors about pain management and better pain killers. I'm in near constant pain and I know what it's like when it's uncontrollable.

Just take little consolations - some days I can't get out of bed, other days I manage to go to the gym. And you never can live life to plan, life just doesn't work that way - it's like a river, it will make it's own course and never run straight!

Former Member

Miss_Riot wrote: »

Talk to your doctors about pain management and better pain killers. I'm in near constant pain and I know what it's like when it's uncontrollable.

Just take little consolations - some days I can't get out of bed, other days I manage to go to the gym. And you never can live life to plan, life just doesn't work that way - it's like a river, it will make it's own course and never run straight!

Thank you for your reply. Its just about taking each day as it comes I guess. It was just such a tough week when all these realisations came at once and it was a lot to cope with and nobody else seems to understand.

I got my letter through today for giving me an initial consultation for my psychodynamic psychotherapy. I'm really scared to start this but know it needs to be done. It means reliving everything that happened in my childhood but I'm hoping that I can cope with this. aghhhhhh! everything seems so hard sometimes!

Former Member

If it's too much be honest with your therapist - don't keep things from them. But if you start getting lots of flashbacks and things make sure you tell them because it might not be the right therapy for you.

Former Member

I read your post a few days ago, and meant to reply then but was busy at the time and forgot. What I wanted to say though, was that I know exactly how devastating leaving university can be and on top of you deciding to leave a hobby you loved, I can understand it's really upsetting as you feel like you've lost your identity. I'm wondering if it's possible you might want to go into college to do a course at a lower level and perhaps build your way back up as I'm sure it's more to do with anxiety that you've not done so well at university. It's really unsettling being thrown into the deep end of learning with *no* support and college provides slightly more support in learning than you would get at university. Additionally, while at university did you receive support from the Disability Service Team? Often they can provide extensions on assignments, provide additional notes if you've missed lectures etc. Obviously, this isn't something you'd consider just now, but perhaps later when you're feeling better it could be something to consider.

In regards to missing out on hockey, could you perhaps take up another sport? Perhaps with less contact/risk of serious injury. Exercise is really important for keeping your mood up and remaining healthy, but of course, if you feel you would rather do something else then perhaps it's a good time to look into other interests you may have (like learning a new instrument or language), this could be incredibly rewarding and will hopefully help build your confidence up because I can imagine it's quite low just now.

I'm really glad you have a supportive girlfriend who has been helping you through this, and it's good you can rely on her to give support. I also hope you feel better soon (both physically and mentally) and I share the same advice as Miss_Riot in that if pain is still an issue to see your doctor and be reassessed for medication. Sorry if I haven't been much help.. But I wish you all the best with everything!

Former Member

Thank you for your reply. Yes I was under the disability team at uni and did get extensions but it's the placements that are my biggest problem. As a student nurse 50% of my course was placement made up of weeks of 12 hour shifts and as I need to do a set number of hours in as set time there is no way around it.

Currently I am not able to participate in any sport due to my rehab but am building it up and hope to get to a level where I can. Hockey was such a love of mine and something I was so passionate about. I know there are other sports but I can't think of any which would provide as much enjoyment. I know I won't know until I try it but right now I'm struggling to see past that. I have started having my physio sessions at the local gym which is getting me out and something I enjoy. I have the Rosetta Stone German course as I did German to alevel but want to improve it. I just can't get the motivation to even start it.

I've got a hospital appointment later so hoping to discuss medication with him as well as all my other problems. Something which is really stressing me out and upsetting is that my hair is falling out and thinning really noticeably. I never had thick hair but I'm so scared it's all going to fall out as it seems to be going that way

Thank you again for your help everyone