Well I was looking at my blog the other day and thinking gosh I have not written for such a long time. Time’s have been hard recently and I was going through a really low patch and I just haven’t had the energy to come on and write. The person I care for took an over-dose and he was in hospital for a week so I had a lot of running around to do. I was trying to give up smoking and failing miserably and in fact every time I cut the nicotine down my mood was going lower and lower. I have had lots going on and trying to get through it all but at the same time feeling so bad was becoming a recipe for disaster.
I tried some new tablets for 5 weeks, they seemed to make me worse and restless and I didn’t feel like I was getting on with them. I had a break for a while and whilst all this other stuff was going on my mood was slowly slipping away. I have made a friendship and got close with someone which just hasn’t worked out and because he doesn’t live here it probably never will. We were talking most days on-line and it turned into like a bizarre relationship over the net but not much else. When he comes here we have met up and we do things together but the things is he always has to go back. I guess if he really liked me then he would choose to move back so as for now we will continue to be friends, just hard! I started to feel worse whilst cutting the nicotine right down again and asked a doctor for some medication. Something I have tried before but instead he wrote me out a prescription for something else. I told him I am very sensitive to meds and he said “oh these are mild and I think you will be fine with them”. Low and behold after about a week in, my head was all over the place. I had a bad reaction and a massive setback and ended up in hospital. I spent 5 days in hospital and I also had a urine infection and some other problem in my blood results. I felt like rubbish but there wasn’t a lot I could do and so that’s why I was quiet for a while.
The Psych’s also came to see me, one of them I met from before who I get on with and we had a good chat about things and I got a lot off my chest. On my last day another Psych came to see me and we also talked about what had happened and he suggested we try the tablets that I originally asked for. A week in I am starting to feel a little brighter already so I think they are actually helping and I don’t feel like I’m bloating out. The worse thing for me is when tablets bloat me out as I have always had weight issues so this is not a good thing for me.
So I am back to writing on here and I will start trying to make it a bit more regular, after all, it has over 5000 hits now and we are over 2000 members on Facebook. I have to remind myself of this as it’s taken me a lot of hard work to get to this point and without your support I wouldn’t be doing it. Thank you all for being part of this project and raising awareness of such a hard and debilitating illness.
One last thing… This Week is suicide awareness Week, Write ‘love’ on your wrist or wear something yellow to show your support for anyone who has or is having thoughts of attempting or succeeded in taking their own life.
Hello you lovely people,
My word had some much going on lately haven’t had the chance to come on for a chat about what’s been going on in my crazy little world. Plus the couple of times that I did come on to write the site was down which was rather unusual as it’s normally reliable. Been up since 4:45am, one of my lovely cats decided to sit outside my bedroom door meowing because he was hungry, little sod! Did try to go back to sleep but once I am normally awake then unless I am really tired then that’s me. Still the sun has just started to come up now and looks like we might even be getting a decent day ahead.
Since the last time I wrote the one I care for spent a night in hospital due to his seizures as he normally has them in clusters. On the Thursday we had his court hearing as the council want to move him out of his flat which was a VERY long day. I was there as his carer and we sat through all the evidence from the council in the morning. The truth be known the council seemed to be telling a whole bunch of porkie’s, there stories were all very patchy or they will give I don’t know, I don’t remember answers. It was very hard and he wasn’t feeling that good and at one point I had to warn them that he may have a seizure and we had to take breaks. At lunch I got him something warm to eat and we sat in the car and warmed him up as the room had been very cold. The afternoon seemed a bit better although this time it was our turn to give evidence. Now bearing in mind he was quite wobbly in the morning and looked like he was going to have a seizure, cross-examination was not the best time for him. I was fuming as the barrister from the other side basically manipulated him into saying he saw a document which was the initial notice which never arrived. The reason why he recognised the document was because I had shown it to him previously and it was being shown in the morning due their witness evidence. I couldn’t believe how clever she was trying to be and I wasn’t allowed to say a word to explain to him what was actually happening. The next thing she did was imply that as he saw the document that this was why he had a bad turn because he saw the document. I knew what she was doing but I couldn’t intervene which I found really hard. Still the next morning I found an old e-mail which proved that what she implied happened was not correct as the time frame was wrong and I sent this to his solicitor for the barristers submission. So I was already annoyed by the sneakiness of the barrister so when it was my turn for cross-examination I was ready with gloves on. I answered all my questions as honest as possible and whenever she tried to imply something negative towards me I came back with an answer she wasn’t expecting. At one point she asked about my mental health issues and the judge stepped in to ask if she was questioning my ability which I thought was good. Still only one issue came up about how many stairs I have at my place as he stays with me quite often and at the end of the day, it ‘s my home not his. Oh and the fact he uses a bath round my place which again it’s my place not his and I don’t need to watch him so often when he has a walk in shower at his place. So all in all, it was a very long day and we didn’t have enough time for the judge to make her decision. The next part of the case will be held this Friday which is planned for a few hours and then we shall find out what the judge has decided. Hopefully she will see that the council were not being truthful and there were more things in his favour rather than against. To be honest it’s taking its toll on him also as he has been hitting self destruct a bit so a good outcome would be better for him.
The weekend it was the Queen’s Diamond Jubilee and on the Saturday I got up early and went out and about. I couldn’t get hold of him for most of the day so I presumed he had gone home and fallen asleep. Finally in the evening I got a call from him saying he was in hospital so then I knew that he had, had another seizure. On the phone he told me the hospital had lost all his stuff so could I bring some clothes and things to the hospital for him. The stuff included the bag I got for him which has all his important items in so I immediately called the bank to cancel his band card. I grabbed some things for him and got to the hospital as quick as I could to find out what happened. On the way I called security on my bluetooth to see if they had found or been given anything but they said that they hadn’t. Basically when they put him on a trolley they took his clothes off, coat and trainers and proceeded by putting it all on the trolley with his little bag he carries. Somewhere along the way his stuff had either been picked up or he had moved onto another trolley without his belongings. I was fuming “again” as all he had been left with was his socks, boxers, track suit bottoms and a hospital gown, nothing else! No money, no keys, no phone number to call me as they were in his wallet, luckily he remembered my house number or he would have been in more trouble until I found him. I had to go around the departments asking what had happened and try to get some help which wasn’t much. I did this on the Saturday and Sunday and I was stressed out as he had keys to my place also and had written my address down also. So that weekend was a total nightmare and as it was a double bank holiday they couldn’t check their safe until the Wednesday, or so they say. On the Wednesday I got in touch with the hospital and they said that nothing had been found so I then had to write-up a letter of complaint and describe what had been lost. I also had to write the value of the items and the possibility of getting locks changed as well. I had to phone the police due to the fact the items could have been stolen and the fact that they were lost in a place of care. One of the sisters had tried to claim he was responsible so I had to point out that he was post seizure so the hospital in fact were responsible, the list goes on. Still in the evening I watched the Queen’s Jubilee concert which I enjoyed very much and I got the chance to relax.
Last Tuesday, ten days later I went on a course for a day which I will talk about later, which was a very long day and I got a call on the way home. It was only the CT department and she had found a note that I put into his wallet. The note says if the person is taken to hospital with seizures then to call these numbers, the first being mine. I was like “you haven’t gone and found all his stuff have you?”. The lady replied by telling me that she had found his things and the note had enabled her to call me. Ten days later his stuff had been found on a trolley!! The trolley had been going around the hospital without anyone noticing it was on there or anyone checking it was there after we asked many departments where his thing were. I kept saying to staff it must be there somewhere as the whole lot disappeared together rather than just one thing. So the good news was, he got all his belongings back without a thing missing and the relief that they keys were safe was good news too! I went and picked it all up but I told them the complaint still needed to stand due to all that had happened from start to finish.
Any good news for me… Nope, ha ha, the friend that was messaging me a lot has been a bit of a nightmare. I couldn’t get my head around all of it and in the past week he has done nothing but let me down. I have been strong this time and told him that I was annoyed and when I missed his call yesterday I didn’t return it as he would expect. I was busy anyway, spent the day with an old mate, mixing some tunes and cooking a roast. Still that’s another story for another time as I am sure you will be exhausted after reading a snippet of the last couple of weeks, he he…
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…
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…
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:
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….
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/
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….
Well what can I say, what a horrible weekend that was! Not like me to talk like that but I was in so much pain it was unreal which in turn was triggering my worries and anxiety. I visited the out of hours doctors who were pretty useless and only really got somewhere by today. My TMJ (jaw) joint had been playing up and it felt like someone had their hands around my head and crushing it, it was awful. After that I started to get pain in my groin area which was also extremely painful and the whole time I just could not relax. When I took either Ibuprofen or Co-codamol it just would make me go numb later or give me pins and needles, not nice. I am not supposed to take Ibuprofen anyway as I suffer with a lot of acid and it isn’t that good for your stomach either. So basically I was in pain, my muscles have been going into spasm and I felt pretty rubbish. Yesterday I visited the hospital and finally got something to help me relax and things have started to improve. Because I have been in a lot of pain recently I finally gave in to taking another tablet that I was on many years ago. Started it on Friday and actually starting to feel a bit better today and I am only going to take a very low dose. I even have anxiety about what tablets I take and what the side effects are and so on and so on.
On a better note after I got something to help me relax and had a sleep I was able to make it to the football game I spoke about. I said to the one I care for, “look I will try to take you there but if I don’t feel good or am in pain then we will have to come home”. Well we managed it and it was awesome, we had a front row seat and we stayed seated nearly all the time which also helped. Our seat was so much better this time as we were close to the half way line and we had a brilliant view. What a game it was, we won 3-0 and out team will on our way to Wembley for the final in a couple of weeks! I even ordered a couple of hats today as well, get me, someone that never really liked football before, becoming a fan.
Wristband orders are still coming through and there is only about a third left now so it’s all going great. Everyone has been posting messages about how happy they are or that they are wearing them and posting pics, it’s a real achievement. I guess I should be really proud, need to learn how to pat myself on the back as I am not very good at that…
I went to the doctors this morning and he actually seemed to know what was wrong, I had trouble with my pelvic bone which could be from my back pain. I have got some more tablets should the pain flare up bad again and also a referral to a specialist in July. Oh and I forgot to mention I had a bladder infection so no wonder I felt so rubbish.
So today I am finally starting to feel a bit brighter, I am not in so much pain, I have a couple of answers and my tablets have perked me up a little. Onwards and upwards for this week as everyone has been so supportive and I need to stay with that thought.
Gosh my doctors are a nightmare, just can’t seem to get anywhere with them or get an appointment for a week after I call. I saw a doctor over 2 weeks ago who was going to make me a new referral to Neurology but guess what that got messed up too. Once I found out that she hadn’t done it a week later, I book another appointment which I got for a week later. When I got to the doctor’s she wasn’t there and I just saw this other rude doctor who hardly looked at me and was quite rude in fact. I told him the problem and he just tapped on the computer saying he didn’t even know how to do it! I asked for some blood tests as through loads of research I think I may have found the problem myself. Could it be that I am lacking in a vitamin, yes something as simple as that can cause all the symptoms I have been having. I have been on these other tablets for quite some time and through lots of research I have found out they can cause this deficiency. I managed to get another appointment yesterday with a doctor there that I know and asked him if he would prescribe me this vitamin. The answer was no and I told him all about my symptoms and he seemed to agree that I could be deficient also. Although at the same time he seemed a bit shady with the fact I may had realised that one of my tablets could have been the cause as I could sense something at that point. The doctor has now referred me to a Haematologist which I have to wait another 18 days for which is so frustrating. Still who knows, I may even be able to get the answers that I’m looking for rather than just having a mystery illness… I have stopped the tablets that I think have been affecting me and I have actually lost of a bit of weight also which is always nice. I am going to try to keep the anxiety at bay as the symptoms I am suffering are horrible and they frighten me a lot of the time.
I had a good nights sleep last night, have been for a walk to the supermarket this morning and going to be heading out in the car shortly. Hopefully I can try to stay positive, eat lots of nice food and be happy at home with my lovely cats….