The Wait
After 7 months of waiting, on Monday the wait was finally over, I finally got my appointment to see the Neurologist again. I made sure we left early and the one I care for said he wanted to come along with me for some support, so off we went. We were not far from the hospital and we were still quite early so we decided to pop into Tesco’s to get a few bits. I still wanted to be quick in there although the one I care for was really taking his time, I asked him whether he was going to have a fit. We got over to the hospital and the story was the same, he was walking very slowly although now he was starting to look a bit vague. I booked myself in and he sat down and I kept looking over, he seemed like he was about to go. I told the lady that was booking me in the he was epileptic and I thought he was going to have a seizure. I was advised to get one of the nurses should he do so and by the time I got to him he was in the trance before the seizure. I had to warn a few people nearby that he was going to have a seizure and one lady helped by going over to get a nurse as I was over him, making sure he didn’t flip about too much. The nurse came and by which time he was starting to fit, the whole room was pretty full and everyone was watching. Myself and the nurse were protecting him, she was in front of his chair and I was behind him. After his seizure, it all went quiet then a couple of minutes later, he had another one, this time, a lot bigger so we had to hold onto him pretty tight. By the end of this one there were more nurses about and they had called for some doctor’s also. The nurses thought it was his appointment today but I had to explain I was the patient, it was a right old palaver. The next thing they couldn’t get him to come round so they had to get a hoist to get him onto a trolley and out of the waiting room. So his timing couldn’t have been better, the appointment I had been waiting for so long had been disrupted by one of his seizure’s. We then had to go off to a room around the back and I had to answer all the relevant questions the doctor’s were asking. I told the nurse’s again it was my appointment today and how long I had been waiting as I didn’t want to lose my slot. After some time, tests and questions the doctors decided to cart him off to A&E and I could have my appointment and then meet him after.
I had my appointment with the Neurologist and by this time my head was all over the place by what had happened. I managed to get through some of my list of symptoms but then he took me into a room to do some general Neurological tests. I didn’t get a chance to tell him the rest and he told me he wanted to stop a couple of the tablets I was taking. Both are very low doses and suggested that I go on this new one and suggested I had some CBT for the anxiety. I didn’t get the chance to ask him what his diagnoses was as I was quite blank from what had happened although he seemed to suggest a pain disorder and a nerve related issue. I have since looked up the tablets he want’s to put me on and they are linked to one of the possibilities I thought I had. I am not best happy about this either as there are some side effects from these tablets which are not the best. I have decided to order some natural stuff which a friend mentioned some time ago and see if this helps in the first place. As I have mentioned before, I have started to get a lot of anxiety relating to taking any kind of medicine and the truth is there are side effects. I have been going through this for the last for the last year and it has really taken its toll on me but I want to fight it at the same time.
I have been doing a lot of walking recently and I have been feeling better for that, it’s a shame I can’t use my cross trainer right now. The last time I used it, I woke up with such terrible back pain I was considering calling an ambulance. The walking has been good and if I get my strength back up and some good results then hopefully I can use the trainer again. I have bought a little trolley also for when I go shopping, which takes the weight of the shopping and the stress off my body. I like to walk to the supermarket rather than drive as its good exercise and now I have my little trolley it will allow me to continue… 
Off my trolley 
Busy Times
Well the last week has flown since I last came on to write, I have had just had quite a lot going on. Last week we finally ordered the TV and then decided we might as well get the front room painted for when it comes. So it was a case of getting all the painting gear collected, picking up some paint and a few other bits that were needed. On Friday the painting started and by Saturday evening it was all complete, just the big clear up to deal with afterwards. I have decided now maybe to paint the bedroom as well but maybe in a few days time, it’s nice when it looks all fresh and new.
On Friday I had my sisters wedding to go to so I was rushing around in the morning getting all the bits I needed to done. I came back, got myself all ready and even put a nice dress on for the occasion. I gave myself enough time to get there but unfortunately there had been a couple of crashes and the traffic was bad most of the way there. I was really panicking in the car as I never like to be late, let alone for the wedding! I just about made it in time and luckily they were running a little bit behind which gave me enough time to sit down and get my breath back. The wedding was wonderful and afterwards we went to the reception which was in a lovely little venue. I started taking pictures from the moment the wedding started and right throughout the whole day, I captured it all. We all had such a nice time and it was nice to catch up with the family as we don’t see each other that often. Also there were a few emotional moments during the day as there were a couple of people missing which got us all going. On the upside though I made a wonderful video from the pictures and have posted it for all to see and have had a great response.
So since Saturday evening I have been putting my flat back together, cleaning and also sticking the floor back together. Yesterday the TV came and I spent a fair bit of time setting it all up and it’s friggin awesome!!! I had my hospital appointment yesterday as well finally but I will write about that the next time. The one I care for had a couple of seizure’s whilst we were there and was admitted over night which I will also write about.
The sun is shining and have a busy day ahead, catch you soon peeps…
Yawn
Oh dear, tired again, after going to sleep about 11:30pm last night I have been woken up again by just before 4am by one of my darling cats. Once I am awake I find it very hard to get back to sleep, so now I am up, I’ve had a banana, some cereal and a cup of fresh coffee. Just tried to lay down again but now I have a coffee, my mind is like bing… no chance of getting a nap at the moment so thought I may as well do a little post.
A couple of months ago the one I care for said he would buy me a new TV for Easter as he can be kind like that (sometimes) and I took some Xmas presents back too. To cut a long story short, I did a lot of shopping around and bought a TV but unfortunately it was a scam and the money was stolen. Through my own investigations I realised that the money was lost, reported it to the bank, cancelled the card, reported it to action fraud and then made copies for the bank. Eventually after about a month the money was returned but I didn’t realise until about a couple of weeks later. So for the last week I have been busy hunting down the TV I want but this time trying to find a reputable company and eventually I did. So I spent most of Monday and Tuesday on the computer scanning websites and finally yesterday, I found exactly what I wanted and it should be coming by Saturday! Such exciting stuff to be honest as I like my technology and this one is pretty awesome I must admit. Ha, that wasn’t such a short story after all…
Yes so this week, it’s been TV hunting mainly, I still have ache’s and pains most places but trying to put up with them or take good old-fashioned paracetamol. I had some acupuncture on Monday, a scan on Tuesday and finally on Monday I am seeing the Neurologist at the hospital. Those who have been following the blog will know that this is a long time coming as all these problems began in September / October last year and the wait has been never-ending. Still on the up side, I am apparently seeing the top man and hopefully he can help me to find out what is going on. I have a long list of al the problems that I have been suffering with to tell him about and hopefully he will arrange the appropriate tests. Sometime’s I just feel like I am falling apart but I just try to get on with things and do something else to distract myself to stop myself thinking. I mean it was only the weekend before last that I spent a whole weekend in hospital so I am just pleased to be at home coping. I missed my cats too much whilst I was in there, they mean so much to me and I could only use my phone to get on-line which isn’t quite the same as my super-duper laptop.
I am still getting messages most days from my old friend which certainly cheers me up, we have a lot of banter with the messages and have a good laugh also. I am still confused to be honest about what’s going on, I mean would a friend message me like nearly every day just to see how I am? Well I will be seeing him in a couple of weeks so maybe I will find out a bit more as I personally can’t work it all out. I am really enjoying all the messages and the banter but as they are so frequent I am getting a little bit attached. I have something to look forward to most days which make’s me smile and I have the hunch that the feeling is mutual. Guess I just don’t want to get hurt as I have been hurt so many times in the past. I am going to have to protect myself in some way, answers on a postcard please, lol.
Still getting orders for the last of the remaining Wristbands which means I can get the competition started shortly also…
Another pic from Kent
Getting There
I didn’t have the greatest day yesterday, in fact it was going really well until I went out. I needed to go out and buy some presents for my family which I mentioned in my last post. I decided to go shopping in the morning, got some great pressie’s and even a couple of treats for myself and was just about to get a sandwich. I drove across the retail park and a woman was pulling out and seemed to be looking the wrong way. The next thing I did was try to swerve out-of-the-way and low and behold, crash she still managed to hit the back of my car! 
I got out and shouted, I swerved and you still hit me, then calmed down and went and picked up her number plate which had fallen off into the road. The lady was actually very sorry and once I had my shout at her I had calmed down already. Had to spend 30 minutes, exchanging details and stuff and then I finally went to get my sandwich. My car isn’t that bad to be honest, just a scrape at the back that will need repairing, it’s more the inconvenience.
I went over to see my friend after as I was taking him to an appeal hearing, was hoping for some good news for him. We went there, sat and waited and then went into the hearing. After spending over an hour there, his appeal was rejected which was a real shame for him. I felt let down too as I thought he was going to get a better turnout as he has a very serious illness now but they didn’t see it that way. So that was blow number 2 for the day, still we had a nice curry to make up for it. 
Later in the evening on my way home I called the one I care for as he had been calling me and had been at home since the night before. I knew he had been drinking by the tone of his voice and he said he wanted to come round. I just wanted peace to be honest and told him to stay at home because he had been drinking. I got a whole lot of verbal from him and he was saying he wanted to come and get some of his things. It’s just an excuse to come round, he forgets due to his memory loss that this is one of his repeated behaviours. So no quiet night for me, he came round and I just left him to it.
Yesterday it was match day, so I popped out for a couple of hours and then came back to get the live stream up on the computer. I had a great time watching the game and in the 88th minute we scored the winning goal to get us back in the Premiership, get in!! I was very happy with the outcome and that certainly cheered me up for the evening. I just chilled out for the evening in my bedroom on my laptop and watching TV. The one I care for is getting on my nerves a bit at the moment, what with his repetitive behaviours so I left him in the living room watching football.
Got woken up this morning at 5am by one of my cats, little sod but have to say I still love her to bits. In fact she is laying right beside me now after being out for a bit and then having some food. Not sure what I am going to get up to yet today but know that I am going to get out and about. A friend is cooking a roast and I have been invited which is great as I don’t need to do any cooking then for the day. I am normally able to bring plate home which I can give to him, hence not cooking.
Still getting nice message’s from my old friend, I am a little confused to be honest as I am enjoying the messages but not so sure what it’s all about. It’s hard to explain but I keep thinking and although I am enjoying it, I don’t want to be set up to get hurt. Think we need to have a chat at some point to find out the intentions so I can work out which way to go about it……
And hey don’t forget the PDSN wristbands before the competition starts…
http://personalitydisordersupportnetwork.com/pdsn-wristbands/
Tough
Gosh it’s been a tough old couple of weeks if I am being very honest what with my health problems getting me down. Most days I have been in pain one way or another and what with being in hospital last weekend. The thing is my depression hasn’t been too bad lately although when things like this happen it can start to drag you down. I am having to take painkillers most days and I try my best to take as little as possible these days but have to if I’m in pain. The good news is, it’s a week on Monday when I finally get to see the Neurologist about all of my symptoms and hopefully he will be able to help me find some answers. The problems started as early as September 2011 with the first attack on numbness in October when I first saw a different Neuro. I am seeing the top man this time, so I am told, I was offered an appointment only 2 weeks earlier but it wasn’t with the one I am going to see this time. I decided to wait as a friend of mine had a Neurological illness and recommended this doctor and explained that he was the top one of the hospital. Also she had a good experience with him and told me how good he was and considering the first one let me down and discharged I am glad not to be seeing him again. I would have only given him a piece of my mind as I was really upset and I didn’t even get my follow even after chasing his secretary.
Today the sun is shining, which has also cheered me up a bit and also my back is not hurting like it was yesterday so onto a better start. It’s my nephew’s birthday today so need to go out and get him a present, it’s also my Dad’s on Sunday so need to get something for him also. It’s my sister’s wedding next Friday so I am hoping to be well enough to go to that and then take their present’s along there. I haven’t seen the family for a while either so it will be nice to see everyone for the day so it’s fingers crossed that I will be ok.
I have been in touch with an old buddy of mine from year’s ago, we met up a couple of times recently and he really seems to cheer me up. We get on like a house on fire and have a good bit of banter and he message’s me most days to see how I am doing. The one I care for has been a nightmare most of the time lately so it’s nice to have someone cheer me up. I mean what with everything else that’s going on for me I really don’t need any further hassle or stress but the one I care for doesn’t seem to consider that. Still had a nice chat with my old buddy last night and that cheered me up some more and it’s nice that he always messages me to see how I am doing. It’s just nice to have something in my life at the moment that make’s me smile for now………
Oh and PS I still have some more wristbands to sell for my charity project so if you haven’t got yours yet or would like one then please see:
http://personalitydisordersupportnetwork.com/pdsn-wristbands/
A nice pic from Kent
Donation
Gosh still feeling pretty awful today, woke up with a bad back and a bad headache, it’s all just so annoying at the moment. Still I have taken some pain killers and have the TENS machine on my back giving me little shocks as we speak and as I am typing. I spent most of yesterday indoors as I still feel pretty ropey and the medication they gave me for my stomach feels pretty yuck also. I was hoping to get out and do a few bits today although now I am not sure as my back is killing me, will have to see how the machine does.
On a better note…. Today I have written a cheque to http://www.mentalhealth.org.uk which is my first donation from money raised from the sale of the wristbands. It was a very nice feeling to write the cheque out, post it on the page and then send it down the road to be posted. I chose The Mental Health Foundation as my first donation as they have been a HUGE support of my work to remove the stigma attached to Personality Disorder. I have a great contact there and she is always so supportive and positive about the things I am doing and has posted links to my work several times.
The PDSN competition will still be happening although I am waiting on another delivery still. I would also like to feel a bit better before I start and hope for the last third of the wristbands to sell too. The feedback from the wristbands has been fantastic and I am glad everyone feels just as good about them as I do.
Painful Weekend
Well that was some sort of a weekend, spent all of it in hospital in so much pain and was really quite rough. I have been having ongoing health issues for quite some time now and still haven’t exactly got to the bottom of it. I was in a lot of pain the previous weekend which continued for most of the week and it was all getting too much. I have also been having terrible headaches so on the Thursday I went up and booked a course of acupuncture to a place where I have been before. I must admit there was a new doctor there and she was really nice and pretty much gave me double the amount of time that I was meant to have. I had needles mostly around my head and skull and a couple on my hands and feet. I am not bothered by those needles as they don’t really hurt and was mainly looking for some relief. After she gave me a 10 minute head massage, it was so nice and I felt really relaxed when I left there. Sadly the next day my headache had come back and I just didn’t feel that great. I tried to go about my day but was just finding it quite hard as I had stomach pain as well. In the afternoon I went to the walk in centre and saw a nurse and she said she couldn’t treat me and that I needed to go to A&E. So off I went on my journey to A&E on a Friday evening, not the best time to go.
I didn’t have to wait that long to be seen, I saw the out of hours GP service to begin and he could see I was in a lot of pain. For some reason he seemed to think I had a kidney stone so he made a referral to the Urology team and asked me to wait to see them. It wasn’t too long before a young female doctor came to see and she then examined me. I showed her where the pain was in my stomach which was pretty intense although she seemed to think it was my appendix. I was next rushed upstairs to be admitted, rushed to X-ray and ultrasound and had some bloods taken also. All of it happened pretty quickly as she was worried if it was my appendix then obviously it can be pretty dangerous. The scan showed I had some problems with my stomach and that was probably the reason why I was in so much pain. I was then admitted to another ward as it wasn’t actually a kidney problem that I was suffering with. I started on medication to help my stomach and also pain relief for my headaches, they had been quite intense for some time. I pretty much spent all weekend there, feeling very unwell and having to call the doctors to get more pain relief. The young lady doctor that was looking after me was so kind and caring and she always did her best to maker sure I would be ok. The problem was that because I was initially admitted to Urology but then moved to another ward if I needed anything they had to bleep my doctors. It turned out to be a nightmare and whenever they did their rounds I was last or they didn’t come at all. Most of the staff at the weekend were a nightmare and not a lot happens as the main doctors work Monday to Friday. I knew the doctor was also trying to get the Neurologist’s involved due to my extreme headaches but nothing happened there in the end either. Time just seem to pass slowly, not a lot got done, I could see the things that hadn’t been done and I felt abandoned on the ward a lot of the time. I mean I was admitted on the Friday and was only given a wristband on the Monday. A urine sample was requested and never even got tested, the list was endless, let alone some of the lazy nurses.
I waited all morning on Monday to see a doctor to find out what was going on so I knew how long I would be staying or whether I would be going home. Some of the treatment had been working so I was hoping to get home to my own surroundings and to be with my cats that I was missing. I waited most of the day in the end and finally one of the main Urology doctors came over to see me to let me know I could go home, thank god! I was discharged on the basis that I would continue the treatment at home and wait to see my Neurologist on the 28th of May.
I have still been quite rough since I got home so that’s why it’s been a little quiet and I have to try to take it easy. Yesterday I had a fair bit of catching up to do in the daytime and then I rested for most of the afternoon and evening. Today I have some bits to do also but again I am not going to do too much as I need to take care of myself. Wristband orders have still been coming in so will be sorting them out this morning and hope to get the last of them sold pretty soon.
Oh and I forgot to mention there was a young male doctor that was on call at night and he certainly made me stay there a bit more bearable. The only thing thing that did cheer me up there was a nice bit of eye candy….
Home
Just got home this evening after an eventful few days in the hospital with not a lot being done! I am really pleased to home with my cats as I have really missed them. Now I am going to try and take it easy if at all possible as I have a fair amount to catch up with now that I’m home. I am going to write a bit more about my stay in hospital when I feel a bit more alive… But for the time being for those who are after wristbands I am opening the page again for now… http://personalitydisordersupportnetwork.com/pdsn-wristbands/
Ouch
Last night was even worse believe it or not, I was in do much pain it was unreal. I felt ok when I wrote the last post but then woke up again in agony. Tramadol didn’t work & neither did oramorphine, it was horrible… :’( In fact that was the worse headache I had ever had & turns out it wasn’t my TMJ joint. Even worse than that is my doctors are on another ward so anytime I need anything, they have to bleep them.
Finally today things have started to improve, although my blood pressure has been low. I have slept a lot today & the pain has been so much better. Tomorrow I am meant to be seeing the medical doctors & also some other doctors but I won’t threat on that, lol. The weekend here is quiet & not many doctors around and time hasn’t exactly flown either. I am hoping to get some answers & also the chance to go home. I am missing my things & my two baby cats very much & also the page.
At least I have my little car outside the hospital & should I be allowed to leave then I can jump in and go. Will be sure to let you all know and keep you posted x
Agony
I have been in pain the last week or so & it’s just been awful. I had a lot of stomach pain yesterday & was advised to come to hospital so here I am writing about it from my bed. The doctor has been busy trying to solve my problem today & she has been really helpful. I am also in incredible pain from my jaw & have been needing pain relief all day & have only just realised what it was. My brain has been feeling like it is going to explode & I have been in tears a lot of the time today.
I can get onto the page & here from my mobile but it’s not quite the same as my laptop setup. I am sad as I can’t sell wristbands when I am not at home to process, pack or post them. I am hoping to get home soon and I hope everyone understands what’s happening.
Last night a nice Chinese nurse was looking after me & she was quite funny. Well she is back on this evening & we had a nice chat & she has been making me laugh. Considering the amount of pain I’m in, its nice to smile for the first time. Still, am going to go to sleep shortly & pray I feel a bit better tomorrow….
