So last night I posted and I was very worried as people on a FB group were talking about ONS surgery in England and no one seemed to know anything about it being on hold, so I was worried that it now wasn’t on hold and that I just hadn’t been put on the list which is why I hadn’t heard anything. I tend to over think and then start worrying and then I have a hard time stopping it.
So I emailed my neurologists nurse last night to see if she could give me an update as to what was going on. And then I was going to call today to get a quicker answer as I was worrying so much. But I didn’t even get around to making the call when the nurse rang me instead. Good thing I had set my alarm for half 9 otherwise I wouldn’t have been awake when she called at quarter to 10.
She told me that the surgery was still on hold and that they had sent in a proposal to NHS England asking if they could perform a certain number of ONS surgery a year. But the NHS rejected that so they have now moved for individual funding, not entirely sure what that means and involves, and they are waiting to hear back about that.
So it’s not really good news in the sense that the surgery is still on hold but I suppose at least I haven’t been forgotten about.
On another note, I got an email yesterday from the woman who interviewed me for college saying she had received my personal statement type thing, which pleased me as I was worrying that this would be the one time someone didn’t get my emails. She said I would be hearing from them shortly and that she would see me in September. Which is sounds really promising the fact that she says she will see me in September. It’s not guaranteed that I’ve got a place until I hopefully receive a letter saying I have one, but it’s looking pretty good from what she said, so really pleased about that.
Also the woman who interviewed me said to ring up the universities that I am thinking of applying to and see what the entry requirements are for access courses and if there is anything extra I can do to enhance my application. I was unsure whether possibly my top choice would take access courses as it didn’t say they did on the UCAS website like all the others did, but I rang them up today and they do accept them, so also pleased about that. Basically to get into the universities I’m looking at I need to get at least 45 credits at level 3, with 30 at distinction and 15 at merit or higher. And they didn’t say there is anything extra I can do other than have a strong personal statement and reference. So I’ve just got to concentrate really hard on getting enough credits at the right grades and then hopefully I will be able to go to university, fingers crossed.
Still really scared about going to college and what it will mean for my pain levels, but I really want to do this so I’m going to try really hard to do it.
I’ve got more than enough worries at the minute but it now seems I have another one to add to the equation.
I was told in November by my neurologist that Occipital Nerve Stimulation surgery, which is my last available option had currently been put on hold by the NHS because the NHS hadn’t decided whether they are going to fund it anymore and until they had decided nobody new to list was getting funding for it.
I was put on the list late November and I haven’t heard anything about it since, I just presumed that nobody was getting funding at the minute and the surgery was still on hold for the time being. But I’m a member of a Facebook group for this type of surgery and today someone in the UK posted about getting it done, so I commented asking if the surgery was still on hold and nobody seems to know that it was on hold in the first place. Leading me to believe that maybe it’s not on hold anymore. They told me to ring my neuros nurse so I have emailed her, but I kind of want to know the answers to my questions sooner so I might just ring them tomorrow and find out what is going on.
I worried that I haven’t heard anything because they haven’t actually put me on the list, but then at the same time I’m thinking that I am fairly new to list that they probably haven’t gotten round to me, but I’m torn between thinking the two. I just really want to know what’s happening with the surgery if it’s still on hold or whatever, and if it’s not on hold where am I on the list, how long will it be for me to get funding, how long will it be till I can get the surgery done.
I’m doing better emotionally overall, but when the pain gets bad I go downhill fast, and the pain gets bad a lot, if I could have less bad days that the surgery could give me then I would be doing a lot better. This surgery could potentially help me so much.
I understand the road to getting surgery is a long process but I’m starting to worry that I have been forgotten about and that is why I haven’t heard anything.
So I’m now in an awful mood after my phone call with the DVLA. I rang up to see where my provisional licence application was at, which I sent off over a month ago now and haven’t heard anything.
The guy on the phone looked up my details to see where it was at and said that my case has been sent to a manager and a decision won’t be made for another three weeks. They have had it over a month now and it’s going to take at least another 3 weeks for them to decide. And it doesn’t sound promising the fact that it’s been sent to a manager, does that mean the first person that looked at it couldn’t decide to give me it or not so they have had to send it further up the line.
The thing what is so frustrating is that I know I’m safe to drive, and I’m doing a lot better, my depression is a heck of a lot better and I’m starting to come out of it gradually, yeah I still have bad days but most of the time I’d say I’m doing okay. I feel like if they decline me again I will feel like I’m getting punished even though I’m getting better. And I am petrified I won’t get it which will mean I won’t be able to drive to college next year and my mum won’t be able to go to Dubai as often as she will have to continue driving me around.
I’m just so pissed off and frustrated with it all. I had a nice weekend and just coming home and hearing that they still haven’t made a decision and how long it’s going to take has put me in an awful mood.
Hope is a hard thing to hold on to, especially if you have chronic pain/illness. It’s hard to hope for better times when you are in so much pain which never ends. You feel hopeless, you can’t picture what it would be like to not be in pain anymore and you can’t picture a future without pain. And that in itself is hard, you struggle to see the point in living when all your life seems to consist of is more pain and misery because of the pain, so you start thinking that what is the point in going on.
You try treatment after treatment to try and ease your pain, each treatment comes with the hope that maybe it will help, but then it doesn’t and you are left feeling even more disappointed and hopeless. You try not to hope too much that a treatment will help because you don’t want to be left feeling disappointed, but there is always the possibility when trying something new that it could help, so you really can’t win.
I have spent a long time feeling hopeless, feeling miserable because I will probably always be in pain and feeling like I don’t want to live if I’m always going to be in pain. But there is a life with chronic pain that can still be a good one, yes you may always be in pain and yes that sucks and is horrible but I’ve realised that I can still try to live a good life despite pain. I have come to accept the fact that I will probably be in pain for the rest of my life, even if I get surgery it won’t get rid of the pain completely. And you know what, I’m starting to feel okay with that, yes it’s not the ideal life living with pain, and there are times still when I’m in so much pain I still want to die at that point in time, but that blows over when the pain slightly eases. But I have a lot more hope now, I feel like I actually have a future and that I can still live a good life even with pain.
If you are struggling with chronic pain and the depression that often comes with it, I want you to know that it is possible to live despite pain. If you are doubting that I want you to know that I never thought it was possible either and it’s been a long road to get where I am now, but I feel better emotionally than I have in years and more like myself than I have in years. I now have hope for the future instead of feeling hopeless all the time.
So I have somewhat of a busy weekend, which is really rare for me; usually my weekends consist of staying in bed and going to taekwondo. I don’t really have any friends where I live so it’s not like I have friends to go out with or anything.
Tomorrow evening I am picking my best friend up from the train station, we met at school when we were both living in Dubai, and she moved back for university last year. But her parents live about an hour away from me and she’s there for spring break so is coming down to visit me. We are going to go for dinner and then she is coming back to mine to stay the night, mainly because she can only come to see me late tomorrow afternoon, and on Sunday me and my mum are driving through where her parents live anyway so decided it would be a lot nicer if she stays the night and we take her back home tomorrow.
And then Sunday after we have dropped my friend back we are going up to Surrey where my mum is from for a get together with all my mums old school friends at my mums best friends house. My mums best friends daughter will be there who I am close to so I’m looking forward to catching up with her, and also seeing my mums best friends 9 year old twins who are possibly my favourite kids in the world. And then we are going to stay the night there so my mum can have a drink and doesn’t have to drive back to where we live which is about a two hour drive.
On Monday we are also going to see one of my mums other best friends who lived in Dubai but got diagnosed with cancer so had to move back to England to have chemo to prolong her life, but the prognosis isn’t good at all. I haven’t seen her since she started treatment, but she is really lovely so it will be nice to see her.
So I have a pretty busy weekend, I’m looking forward to it but the pain hasn’t been good the past few days, hopefully it will behave itself and let me have a nice weekend.
So I had my interview today… and it went great! Like really great. I was very prepared for any and all questions I had predicted that I would be asked, and I wasn’t asked a single one. It was more like an informal chat with my interviewer telling me all about the course and what it involved. Because I want to study psychology at university it is required that I obviously take psychology and also sociology, and then I can pick two other subject modules out of law, english literature and history. So I’ve chosen law and english literature as I don’t really like history. The course is 3 hours a week for each subject in college and then 3 hours at home a week for each subject. I would have Mondays off and then be in college the rest of the week, and I would also have a tutor period and a study skills period each week.
She said that every university accepts access courses so I can apply anywhere I want to go basically. She looked at my GCSE certificates and said my grades were amazing as they are all A’s and B’s oh and one C but that was in business studies. And she looked at my reference I gave her from my old A level PE teacher which is a really nice reference, and she said that was amazing. she said based on all of that I am more than likely to be offered a place. All I have to do is write a short essay kind of like a personal statement on why I want to do the course etc, basically all the questions I was prepared for her to ask me in an essay. And then send that to them and once that has been received I will get a letter offering me a place or not. But most likely offering me a place she said it is rare to be turned down especially when they can see from my qualifications that I am more than capable of doing the course. She also said that I wouldn’t find the course hard because of my qualifications.
The only question she asked me was when I was filling in some forms was that she asked me if she could ask what my medical issues were. I said that was more than fine, and I was happy to tell her so I told her and she was really nice about it, and said that if I get offered a place on induction day she would show me to the woman who runs the quiet room for people who are slightly on the autistic spectrum, and that I would be able to go there if my head got really bad for some peace and quiet. So I thought that was really nice of her.
Overall I’m really happy with how it went, and I feel confident I can get a place on the course. I’m going to write my essay tomorrow and send it off, I was going to do it tonight but I went to taekwondo and now my head is bad, it’s also late and I have jet lag and need to sleep. So tomorrow I will get right on that.
So today is my college interview, at at half 3 (UK time) and it’s safe to say that I’m pretty nervous. I’ve been preparing for it for quite a while so I think I’m ready for it. Just got to make sure I don’t say something stupid or start shaking as that won’t look good.
I got back from Dubai yesterday afternoon. My trip was alright, the pain behaved itself which was surprising, in the ten days I was there I had one bad day which for me is pretty amazing. It’s a rare occasion for that to happen, and even rarer for that to happen whilst I’m in Dubai as usually it gets worse there. I didn’t do a lot whilst I was there, some of my friends were there, I went out with them twice and it was pretty difficult, like I said in my previous post. Other than that I didn’t do a lot, but I saw my school counsellor which was lovely, I always enjoy and look forward to seeing her. And on Monday night me and my family went to our favourite steak restaurant which was really nice. But I was looking forward to getting back home to England.
On another note my left wrist is giving me hassle again, it started giving me hassle about 6 months ago, so I went to physio but that didn’t really work so I had to strap it up in a splint for months and that helped and sorted it. But now it’s started hurting again and I can’t put any pressure on it so I’ve had to strap it up again to see if that helps. Hopefully it will. I’m pretty sure it hurts because I have Ehlers Danlos Syndrome, which is a rare connective tissue disorder and can cause pain in joints. I have a bit of a problem with the back of my right knee as well. But there isn’t much I can do about any of it, it’s just annoying. I still manage to go to taekwondo though, I just have to avoid press ups cause of my wrist and be careful on jumping kicks (which happen to be my favourite) cause of my knee.
Anyway I will post later about the outcome of my interview, I hope it goes well!