The truth about living with poor mental health

I haven’t written a post since last year! Although that was only three weeks ago! When I wrote that post, I was hoping I would have some positive information to share, particularly in regard to my mental health. Unfortunately I don’t.

I’m not going to lie, my mental health is the worst it has ever been. I’ve got a possible diagnosis of borderline personality disorder (BPD), which will hopefully be confirmed this week. I say hopefully, as even though that diagnosis was a shock, I’m glad I have an answer to how I’m feeling, as deep down I knew more was going on than just depression and anxiety, although those do come alongside BPD, but having a diagnosis doesn’t stop how I’m feeling. I have never felt such intense anxiety or such an overwhelming depressive feeling before, these feelings can come at any time, sometimes they come out of no where and last several hours, other times they last all day. The all day ones are the hardest to cope with, well actually I don’t cope. I am with the home treatment team for mental health (a crisis team) who ring me everyday and visit too and I also see my support worker everyday, who is extremely helpful and kind. When I get overwhelmed with how I’m feeling, I literally do not know what to do, I can’t think, I can’t make decisions, I can’t be distracted, I am trapped in my own head for hours and will do anything to make those feelings stop. This has led me to feeling intensely sucidal, acting on those thoughts, self harming and falling back into eating disorder behaviors. But I am asking for help, I engage with my team, my support worker and my CPN (community psychiatric nurse), I take all my meds and try to be as honest with them as possible, as I do want to get better. I had another crisis this week and told them I had been trying to take my own life, I was almost admitted back into hospital, but my mood changes so dramatically day to day, even hour to hour, meaning I am not always sucidal and can feel much more rational. So after a two hour meeting with my mental health team, CON and support worker, they decided I can stay at home, as long as I continue to ring them when I feel that bad. At this very moment I don’t want to go into hospital and I have been trying really hard to try and cope better and to ask for help when I feel too unsafe, but some days I’m such a risk to myself I want to be in hospital, which is a hard thing to admit.

This week is going to be hard, as I am moving into my supported flat, I was waiting everyday last week to know if I had been accepted for the flat and finally on Friday I was told I had been. It is a relief to know I have somewhere to move to, as my current tenancy ends at the end of the month and I didn’t know where I would be living once that ended, so I was considered homeless. However, I am so nervous and scared about moving. About living in a new place, being around new people and about how I will cope with all my thoughts on that first night in a place I don’t know. My support worker is going to help me paint it before I move in and help me unpack all my things, so that it will feel a bit more homely for me. Although I know I’m still going to be so nervous, no matter what we do to the flat.

I am so grateful to my support worker for doing all this for me, she leaves her phone on every evening and weekend, even though she’s not working, just in case I’m in crisis and need help. Part of my illness is that I have attachment issues and fear people will leave me. I know I am extremely attached to my support worker, probably a lot more then she realizes, but I can’t help it. I don’t know whether I should tell her, so that she is aware of how I would feel if she left or couldn’t see me anymore, but I’m scared to incase she intentionally starts to limit her contact with me, to try to help reduce my attachment to her. Do you think she should know how I feel?

With all this going, fortunately my POTS has been manageable, which has allowed me to be able to start packing, if I was in a POTS flare at the same time as this crisis, I really don’t know what I would do. I’m seeing my cardiologist in two weeks and have to give him my decision on whether I want the ablation on my heart, I think I will say yes, but it’s just another thing for me to worry about!

I am trying to focus on the positive things. I’m not going to be homeless, I have somewhere to live which is affordable and comes with the support I need, my support worker will still see me everyday and once I’ve moved in, she will help me focus on other things, such as going to a pottery class and to a therapeutic horse sanctuary, for those who are ill or disabled. I used to have a horse, so this is something I really want to do.  When I’m in a crisis or feeling too overwhelmed these are the things I now try to think of, that there are things I do want to do, I want to have my niece run up to me with hugs and kisses, as she’s so happy to see me, to be able to go on holiday again and go out with my friends. I’m still taking it one day at at a time, but hopefully after this week has past, things will finally start to improve.

Goodbye 2016

I don’t know about you, but I can’t wait for 2016 to be over. It has a been such a shit year, personally for me both physically and mentally, but it seems like the whole world has had a tough year, what with unexpected election results, the fighting in eastern Europe and the death of so many well known people (Carrie Fisher’s death I found particularly upsetting, as she did so much to raise awareness for mental health problems and seemed like she had so much more to give). so with only two days left to go, I’m hoping nothing else is going to happen!

Christmas has been hard this year, I’m usually all for Christmas, I love the build up, the decorating, cooking, seeing family, but this year I haven’t wanted to do any of it and to be honest I haven’t. I did see family, but that was it for my contribution to Christmas this year. When you’re physically and mentally unwell the thought of trying to sum up the energy to carry out all the Christmas activities as well as trying to engage in it, is tiring in itself and that’s just the thought of it! I did find it hard, I spent it with a lot of my family and even though it was nice to see them, there were times I didn’t want to be there. I was so anxious, with all the people, noise and activities going on, I just didn’t know what to do with myself. It did get better though, I was able to talk to my cousin, who I find very helpful to talk to. I know I should tell her, as I feel it’s important to find someone you can completely confide in, it helps so much, but it’s also important that they know how important they are to you and how much you value them. I wish I could say this to her, but I wouldn’t know how to, hopefully one day I’ll be able to. She helped me so much and managed to calm me down so that I was even able to play a few games – a Christmas tradition for our family!

But now it’s back to reality, back home alone, with only my thoughts for company in the lull between Christmas and New Years. I don’t want to do anything for New Years though, although I’m happy that 2016 will be over, I’m scared of what 2017 will bring. All the changes that I know will be coming, thinking of how I will cope, how I will feel. I’ll be moving house in January (still don’t know where!), living on my own, having a procedure on my heart, trying to start work… It just feels like there’s too much for me to try and deal with, sometimes my head literally feels like it will explode! And that all these thoughts and emotions have no where to go, which results in them making me upset, irritable, frustrated and in complete and utter despair. How do you deal with things when it seems so overwhelming? I’d be interested to hear any coping stratagies you have, as mine don’t seem to be working too well.

I didn’t mean this post to be so negative! But sometimes I just need to let out how I’m feeling. But there are positives to the end of 2016, the new year will bring new opportunities, I’ll have chances to hopefully go travelling, go on holidays with friends, without anything holding me back. If i can get my photography business up and running then I’ll hopefully be doing a job that I love and working for myself, which is something I’ve wanted to do for a long time. On that note I hope everyone has a great new year and fingers crossed it won’t be any worse than this year has been!

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Life on a psychiatric ward

I didn’t expect to be writing this. Six years ago I was on a psychiatric ward for 6 weeks and did not expect to ever go back there. However, a week ago today I was admitted back to my local psychiatric hospital.

I’ve been struggling a lot recently with my mental health, I had been phoning my mental health team everyday in tears and very distressed, but a week ago I was feeling particularly bad. I had an appointment with my doctor but I couldn’t hide how I was feeling, she knew I was in a bad way and sent me over to talk to my CPN (community psychiatric nurse). Talking did help and when I left I did feel calmer, I took a diazepam too, which is to help calm me down. I was feeling ok for about two hours, but suddenly those feelings came flooding back, even more intense then they were that morning. My housemate was in the shower at the time, so I was on my own, I wasn’t able to cope with how I was feeling and ended up hurting myself. Some part of my logical mind was aware what I was doing and knew I needed help, so I walked back to see my CPN. I broke down again, told her what I had done and that I just couldn’t cope, I wanted everything to end, not to die, but just wanted to get out of that situation and was seriously thinking of ways I could do that. Two more nurses were called in and they did a risk assessment, to assess if I was a risk to myself. They all agreed that I was, deep down I knew it too, but didn’t want to admit it, as I knew that would mean hospital. When they said they would be admitting me, I could hardly speak. I was so anxious and scared, due to my previous experience of staying there, but they were reassuring me, saying it has changed a lot in 6 years. Eventually I calmed down and everything was set in place. My housemate dropped off some clothes and then we left, we had to drive an hour away to be booked in at a different psychiatric hospital before I was picked up by new nurses and driven to my local psychiatric hospital.

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The nurses were lovely and were right about the hospital, there were less patients there this time and a lot more were around my own age. I doubt many people have experienced staying in such a hospital, but when you arrive everything is searched. Charging leads are taken off you and you have to request to charge your phone, which is done in a locked room, any item that is seen as harmful is taken away from you, this includes – plastic bags, razors, pencil sharpeners, tablets, belts… You have to be checked every so often, depending on what the nurses think is required, I was checked every 15 minutes, even through the night. I stayed there for two nights and it wasn’t as bad as thought it would be, I was still very anxious around most of the patients and didn’t like being in the living room when there were a lot of people and lots of noise, but otherwise I think I coped relatively well. I was discharged on the Saturday in order to go to my MRI scan that afternoon and to go to my appointment in London on Sunday for my POTS, which I had been waiting nearly two years for.

My mum picked me up, but about two hours later I rang the ward, I was so distressed again, saying I couldn’t go to London, wouldn’t know how to cope if I felt like this whilst I was there, part of me was hoping they would tell me to come back, but they said my bed had already gone. The only other option was for me to go to another psychiatric hospital, which was further away and much bigger, I said no as I thought that would make me worse, as new people and places make me very anxious. My nurses said that it was very important for me to go to the London appointment and that I could always ring them if I needed to, so I agreed to go.

I went to London on the train with my mum and was pleased at how well I was coping, I was a bit anxious, but it was under control, even when we got to London I still felt relatively ok. As we approached the hospital I started to get more and more anxious and when we arrived to the ward I couldn’t cope. It was so big, busy, noisey and the other patients there were very ill. I was shaking and crying so rang my nurse. I told her I couldn’t cope, I wanted to run away, couldn’t stay here, was having bad thoughts again, she was trying to reassure me and make sure I was safe. Whilst I was talking to her my mum talked to one of the doctors to explain what I’ve been going through and they thought it would be best if I was moved to a different ward. I was moved to the neuro-psychiatric ward. I’m glad I was. It was much smaller, calmer, quieter, we had our own lounge, dining room and drink and snack making facilities. I was in a 4 bed room but it was only me there that night. The nurses were lovely and I felt much better by the end of the evening.

I was on that ward for three nights, whilst I underwent all the autonomic tests. They were very unusual! On the first day I was laying down for three hours on a tilt table, I had 3 different types of BP monitors attached to me, an ECG, a strap to measure my respiratory rate, plus 3 straps to hold me onto the table. It looked like a torture device! But it was fine and it didn’t hurt. I did lots of breathing exercises whilst all my vitals were monitored, resistant exercises and it ended with a 45 minute tilt, so the table is moved from horizontal to vertical. This did make me feel horrible, that’s what happens when I stand or walk for too long, because of the POTS, so it was ended after 30 minutes. The second day I was back on the table for over 2 hours, I had to drink a meal replacement milkshake laying down! Then wait for 45 minutes, it was very hard to stay awake! Then tilted for 10 minutes.  On the last day the test was only an hour, I was laying down again and had to cycle for 9 minutes, whilst the intensity increased, I did find this very hard and almost passed out when I had to stand up. I will hopefully get the results next week and will finally be able to receive the treatment I need.

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We left in the afternoon after my last test, I was feeling quite anxious again and I had felt quite bad a few times on that ward, I did talk to my nurse on the ward about how I was feeling and they were liaising with my CPN at home, to keep them aware of how I was feeling. I’m at my mum’s now and I go home tomorrow, where I will be assessed again to see if I have to go back to my psychiatric hospital. I really hope I don’t as it’s so close to Christmas.

FIngers crossed the next time I blog I will be at home!

Sharing is caring

Sharing is caring, is a lovely saying and really is true. It works on so many levels, if you share some chocolate with a friend or offer to share your sister you favorite dress, this shows that you care about that person, but sharing your feelings and thoughts gives friends and family a chance to show that they care about you.

I have found this over the last few days, I have been struggling severely with depression and extreme anxiety, but unable to take any medication for this, as I have mentioned in previous posts. This weekend I went up to stay with some friends, I find it very difficult to talk and haven’t really told them anything that has been happening to me over the past few months. I really wanted to tell them that weekend, but I didn’t know how to, I tried and we got onto subjects that were close but I still couldn’t quite open up and they still didn’t ask, even though they knew something was wrong. This is what I found difficult, they knew something was wrong but still wouldn’t ask, if it was the other way around, I would be asking how they were, as I genuinely do care about them, I do know they all care about me but they find it hard to talk too.

Eventually it all came out, I had a break down in the evening, a lot of extremely personal difficult things are going on, not just as straight forward as a break up or moving house, but being classed as homeless and my housemate who I live with (who was my fiancé) came out as transgender. I fully support this decision but the slightest thing can tip me over the edge these days and a simple text from this person, stating another change, was what did it that weekend. I couldn’t hide how I felt any longer, I went to the bathroom to try and calm down but I was so upset and agitated my one friend eventually came in. She is a teacher and had a very calming influence, she waited for me to calm down and I came and sat by her, I couldn’t talk much as I was shaking so much, but she just waited, she asked was there anything I wanted to say and through a lot of stuttering and crying I told her everything, my other friend came in at that point and I told her too, she got upset herself, saying she was sorry she hadn’t talked to me about all of this, but said it was because she didn’t know how to and she asked if it was ok to ask me how things are, it was so lovely of her to ask, I told her it’s fine to talk to me about anything, things about herself or things about me. Eventually my other friend came in, so all four of us were in the bathroom having a heart to heart. It helped me so much. I went from having a break down and thinking about running away, getting a train, wanting to do bad things to myself, to laughing with my friends whilst we were all sat on the bath and toilet!

They have all been so supportive, more then I ever imagined, they have all offered for me to stay with them, when and if I need to, one friend said she would give me her key, they said I can ring and talk to them whenever I need to, it has helped me so much knowing I have their support and that I no longer have to hide what I feel or worry about what they may think.

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I still have times of crisis, yesterday and today have been particularly hard, I couldn’t face staying with my housemate yesterday, it was too much for me to cope with so I left, today I was officially made homeless and had to have a difficult conversation with my housemate. I saw my mental health team as I really needed help, I’ve managed to calm down a bit now and am staying at my house with my housemate, as we have agreed to only talk about light things until I’m more able to deal with everything.

So I will leave this post whilst I’m watching I’m a celebrity and drinking a hot chocolate 🙂

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Crisis

Crisis is a strong word to use and not one I would use lightly. It could be a financial crisis,  medical crisis or a family crisis, but over the past week I have suffered from a mental health crisis. In my last post I wrote about anxiety, how I was struggling with it and how it was impacting on my life, but things got worse this past week.

I don’t really know what triggered it but I think it must have been building up for quite a while. On Sunday evening I broke down with a family friend, I cried for hours and couldn’t stop, I realized I wasn’t happy and that important decisions would need to be talked about, but even thinking of these future conversations and possible changes was making me more anxious. I have also felt extremely depressed and at this time I was in a bad way.

The discussions were had and hard decisions were made, hopefully they were the right ones but I haven’t been able to get out of this state of mind. I cried and cried again for the next two days, I broke down when discussions about the future were mentioned as I mentally couldn’t cope with it. I just wanted to run away and disappear, leave all these troubles behind me and let someone else deal with them. I almost did, the thought of getting in my car and driving away, where no one knew where I would be, was very tempting. But I didn’t. I knew I needed help and if I didn’t get it, then something bad could happen. I got a family member to ring the doctor for me and made an emergency appointment, I had calmed down by the time I saw him but it did help. I was prescribed tablets to help calm me down during these anxiety attacks, although I am not allowed anti depressants due to my heart condition, I was also referred to the mental health team and for regular doctor appointments.

I felt better after having seen the doctor, as there is now a plan in place to help me get better and I know that when I am feeling very anxious I can take something to help calm me. However, more difficult decisions have had to be made, we are going to loose the house, money is extremely difficult and where we will be living in 3-6 weeks is uncertain. This is all feeding my anxiety and depression, meaning I am finding it extremely difficult to feel positive or happy at the moment, especially as I am unable to take anything to help my mood.

All I can do is take it one day at a time, even just hour by hour. I am staying at a hospital in London next months for three nights, to have tests done to help better understand my POTS, I have an urgent referral to a cardiologist to try and find the reason for why my heart gets stuck at 220 beats a minute, resulting in hospital admissions. Plus I will have lots of mental health appointments coming into place around the same time. There is just so much going on that it is impossible for me to think of it all at once, so by trying to take it one day at a time and by knowing that help is and will be available, I hope that I will slowly start to get better. I know it won’t happen overnight and I know there will be more difficult decisions to make, but I’m glad I finally admitted I need help, it is much easier to deal with difficult times with the support of friends and family.

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Anxiety

This is quite difficult to write as I never thought I would get anxiety and I find it difficult to admit I have a problem or to ask for help. However, having delt with mental health issues in the past, I know how important it is to get help as soon as you start noticing a problem. I hope that this post can help others to come to terms with accepting that you may be suffering from anxiety or depression and to be able to ask for help.

I have never been an anxious person, I never got nervous or anxious before exams, I was able to complete university without becoming anxious and I even could perform on stage and do public speaking without suffering from anxiety. However, this year I have noticed that it started to creep in. In my job at the start of the year I was able to cope with it quite well until I injured my back again, but I was always nervous or anxious of asking my managers for anything that I needed. Due to my POTS I needed a chair to sit on behind the counter, but I was too anxious to ask for one, as chairs weren’t usually allowed behind the counter, even though I needed it for my health. In the end it got too much and during every shift I would be so symptomatic and feel so awful afterwards and it was because I couldn’t ask for measures to be put in place that would have helped me. I didn’t realize that this was the beginning of me developing anxiety.

In my job over summer I was less symptomatic as I was able to have a chair and shorter hours, so I was able to cope with it. However, my anxiety creeped in again when I began to doubt myself and worried about disappointing my employers, as I belevied I wasn’t good enough at the job and that my illness was limiting what I could do there and that this would cause them to be angry at me. They weren’t though and it was just my mind over analyzing everything and worrying about things that weren’t actually happening.

I started a new job a few weeks ago, I really enjoy it but for some reason my anxiety has become ten times worse in such a short period of time. Since starting the job I have also had sinusitis which has been making me feel awful and causing my POTS to be worse. I carried on working though as I didn’t want to call in sick, being so new. However, last week I was feeling very ill and was glad for a day off as I knew I was working that weekend, but I received a phone call and was asked to work a 12 hour shift. I became so anxious on the phone that I felt that I couldn’t say no, so I ended up agreeing to do it, but as soon as I put the phone down I knew I shouldn’t have said yes as I was feeling so ill and tired and knew that a 12 hour shift would be far too much. I was worrying about it so much that I couldn’t focus on where we were or what we were doing, so my partner said we would go to the office and tell them in person that I wouldn’t be able to do that long a shift. I spoke to the managers but still ended up agreeing to work the shift as they promised me a few week days off to recover and I felt I couldn’t say no. On our way home I felt so awful, I actually felt physically sick from worrying about that shift so much, I knew I would feel so ill working that long and worried about how I would cope.

When we got home, I experienced a spiral of depression and anxiety, that I haven’t really had before. I felt detached from everything, that I wasn’t in my own mind and almost like I was watching myself from afar. When I do experience such intense uncomfortable emotions like that, I don’t know how to deal with it or how to cope and it results in self harm, which is what happened that evening. I am not saying in any way that self harm is a way to deal with anxiety or depression, I strongly advise against it and if such an urge occurs then try and distract yourself with some other physical activity, like doing press ups, going for a run or even making a phone call to a friend or member of your of family. However, I was in such a state I wasn’t able to distract myself and I knew I needed to see someone there and then. I was still too anxious to talk on the phone as I was worried about what I would say, so my partner rang my doctor and I was able to see him that evening. I talked to him for about thirty minutes, well more like him talking to me, as I find it difficult to talk, although I did manage to tell him what had happened and how I felt like I had to do that shift and I would feel too guilty to ring in sick, for fear of what they may say to me. He told me that I wasn’t fit to work that weekend, not physically or mentally, but this caused my anxiety to peak again, from the fear of having to ring work and tell them, I told my doctor that I couldn’t do it but luckily my partner was able to do it for me.

I had a few days off and felt a bit better, I went back to work yesterday and it went ok, but today I felt physically ill again and so tired, the thought of working until 11 at night was causing me to get anxious. It increased throughout the morning along with my physical symptoms, I told my partner how I felt and he advised me to ring and say I was ill, but I couldn’t. Again the thought of ringing them filled me with fear and anxiety, I got upset again and told my partner I couldn’t do it so he said he would ring for me. However, they wouldn’t accept him saying I was ill and said it had to come directly from me. When I found this out, my anxiety grew again, I was in a supermarket and trying not to break down and holding back the tears, I was starting to feel sick again and unable to concentrate on where I was. This was all from the anxiety of phoning my boss. My partner could tell the state I was in and said he would ring again for me, luckily he spoke to someone different and they accepted his call on my behalf.

I am off work now for a few days until this illness passes, but I am going to see my doctor again tomorrow, as mentally I feel too unstable to be able to work, especially with these anxiety spirals and depressing thoughts. I am hoping for a sick note for a few weeks off work, so that I can try and put myself back together, as well as agreeing to be referred to a psychologist.

I haven’t told anyone what has happened, except for my partner and best friend, as I don’t want to worry my family or friends. I know that’s not the healthy way to deal with anxiety, but I know that by admitting to my doctor that I am suffering with this, telling my one friend and agreeing to see a psychologist, that I am taking steps in the right direction.

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Illness, holiday and work!

A lot has happened over the past two weeks, I’ve started work, been on holiday and overcome illness.

I went on holiday two weeks ago to Sardinia, it was amazing 🙂 I really enjoyed it and it was so nice to just relax for a week and not worry about anything, although I almost didn’t make it! About 5 days before we left, I started to feel ill – bit of a headache, temperature and just felt really run down. The day before we left, we travelled up to stay with my mum, but I felt awful, so weak with a bad headache and earache and the thought of flying the next day was very daunting, I was just hoping I would feel better in the morning.

Unfortunatly I felt worse again in the morning and really didn’t want to go, I rang the out of hours GP and got an appointment before our flight that evening, the DR said I had sinusitis, which was why my face and ears were aching so much, he gave me antibiotics and thought I would be ok to fly. At that point I was almost hoping he would say I couldn’t go, as I felt so ill, I just wanted to go to bed and the thought of flying and possibly being ill the whole week in a foreign country, which could cause a flare up, was not appealing. But I couldn’t not go as it would be unlikely that we would get a refund and we had been looking forward to this for 6 months. We got dropped off at the airport but about an hour later I felt worse again, sick, shakey and so weak, which for me is a sign I might collapse. We were walking towards the gate when my legs gave way and I did collapse. My heart rate was sky high and a paramedic was called, he assessed me and did an ecg, my heart rate had come down a bit to 99 and my BP was ok. He said it was up to me if I wanted to go to hospital or continue with the flight, I really didn’t know what to do, the thought of having a reason to stay at home was very appealing, but I didn’t want to let my partner down and regret not going. A member of staff from the airport said they could get a wheelchair for me to take me to the plane, so I agreed to that and made it onto the plane.

For some reason being on a plane or in water makes me feel better, I read somewhere that this is due to the increased pressure, which causes blood vessels to constrict more and increase blood pressure. So after about two hours on the flight, I did start to feel better and by the time we landed I felt a lot better. I am glad now that I did decide to go, it was such a lovely place and I coped better then I thought, I had a few bad spells and felt worse in the evenings, but I was able to do everything that I wanted to. We went swimming, snorkeling, on a boat trip and had such amazing food! Looking forward to going back one day.

I started my new job, two days after we got back. I’ve just started work as a domicilary carer and so far I really like it. I had my first day out by myself yesterday and it went really well. I also find that the work suits me, a lot of the tasks that I have to carry out are normal everyday tasks that I carry out at home, so doing them for other people is something I am able to manage well, plus there are lots of opportunities for me to sit down, so I’m hoping that my POTS won’t affect me too badly in this job. As I don’t want to have to change jobs again this year!

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No change is sometimes better than change

Sometimes no change is better than change, as although it means things haven’t got better, it also means that nothing has got too much worse, which is always a bonus for me!

Over the past few weeks I’ve been relatively ok, I haven’t been too symptomatic with my POTS, only had a couple of bad days when I was in work, which was a struggle, but work always is for me. Plus a few odd spells at home, one when I almost passed out when I was sat down. This has never happened before and the symptoms came out of no where, as I had been feeling fine all day, then wham! For about 10 minutes I felt like I was on drugs and felt so out of it and then it suddenly went, I’ve no idea what caused that – just hope it doesn’t happen again!

I’m still extremely tired but no worse then usual, tiredness is just part of my personality now I think! The only thing that has got worse is my pain. I’m struggling a lot with my back at the moment and think I may have slipped another disc, so am waiting for an MRI to confirm it. My hips have also been very painful at night, due to bursitis, which I have on both hips, so laying on my side is very difficult due to the pressure on my hips. This of course doesn’t help with my tiredness, as I am finding it hard to get to and stay asleep.

However, I did manage to stay with my friend and go to London over the weekend, whilst remaining relatively symptom free, so I was able to enjoy it as much as I could. We saw The Cursed Child and it was amazing! Even though I was extremely tired and my POTS was starting to kick off towards the end of the day, it was definitely worth it and I coped better then I thought I would.

I’m starting training for my new job next week, I’m looking forward to it as I like learning new things and I think I should feel ok, as it’s classroom based learning so my POTS shouldn’t affect me as I’ll be sat down, although I think my back may give me grief! There’s always something that causes me to be symptomatic, but I think I’ve accepted that now and I just try my best to get on with what I have to do.

This is only a short post as I just wanted to give an update on how I’ve been over the past few weeks, I’m going on holiday in two weeks, I’ll try and write again before I go but if not, I’ll definitely have a lot to say when I come back!

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The NHS

The NHS can be a very controversial topic, we are so lucky to have free health care available for when we need it, yet it isn’t without its flaws.

I have been to NHS hospitals countless times and I usually find that the care I receive is acceptable, yes the waits can be hours long and I have been waiting until 3am for a bed, but usually the doctors and nurses are very accommodating and listen carefully to what I have to say.

However, I had to go into hospital a few days ago due to having a heart rate of 230bpm, I felt awful and was almost passing out, so my doctor told me to go down to a&e. When I arrived I was told there would be an 8-9 hour wait! My heart rate had come down by then but I knew I needed to be seen so decided to wait. My partner was able to stay with me the whole time and we ended up staying in the same waiting room for 15 hours! I arrived at the hospital at 6.30, saw a nurse at 9.30 then a junior doctor at 1am. I was told I would probably have to stay overnight, but she wasn’t sure and there were no beds. I went back to the waiting room, there were 5 of us still there and we weren’t offered any food, blankets or pillows. I was freezing cold so my partner managed to get a blanket for me, but we had to try and sleep on the waiting room chairs. I have trouble sleeping anyway, so that night I didn’t get any. At 5am a senior nurse saw me and said I would be staying the night, although I had sort of assumed that by then! It was only then that I actually got admitted, she did my obs and then sent me back to the waiting room with a heart monitor.

I was given breakfast that morning, but my partner who had stayed with me the whole time wasn’t even allowed a cup of tea! I can understand not giving relatives food, but not being allowed a cup of tea after 15 hours in the same chair seemed extremely harsh. I eventually saw a consultant around midday, she was extremely apologetic for the way we were treated, I could tell that she felt almost ashamed that I wasn’t even able to have a bed or a pillow that night. She discharged me after writing a detailed letter to my GP and is going to arrange for me to have a 24hr heart monitor and possibly a device implanted under my skin to monitor my heart rate all the time, as they are unsure of why it happened and why I get heart flutters often.

That trip to a&e was the worst one I have experienced, most of the doctors and nurses I did see were lovely, but that experience has definitely highlighted to me how much our NHS is struggling. To not even be able to give a man in his eighties a bed is terrible. I know it wasn’t the doctors or nurses fault but something needs to change or it is only going to get worse.

I have decided to take our private health insurance, I was thinking about it for a while but that last trip to a&e made up my mind. I’m hoping that next time I need urgent care I won’t have to wait 15 hours to see a doctor and that I will have somewhere sleep.

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What a busy week!

This week has been so busy for me, mainly due to moving house! I have moved a lot, I think this is my 14th time, which works out at nearly once every two years since I was born – crazy! But this was only my second time moving whilst having POTS, last time I moved I was in a relatively symptom free phase, so I managed ok, but I’ve been in a symptomatic phase for quite a while now, so I was a bit nervous about how I would cope.

But I did it! And I managed better then I thought. I’m having a lot of trouble sleeping recently, only getting about 4 hours and the night before the move I slept badly again. Lack of sleep really agravates my symptoms so I wasn’t feeling very good in the morning, but by the time the first load was packed and we arrived at the new house I felt ok. I worked for about 4 hours in the new house, unpacking boxes and sorting out the kitchen, I was surprised how fast it went! But I hadn’t had a sit down or rest, which for me is a very long time to be standing for! So in the last hour I was becoming symptomatic again and when my mum told me to stop and took me out to get some food, I did feel really bad – very nauseous, dizzy and all the other usual symptoms that come with POTS. After about an hours rest I felt better and was able to continue unpacking everything, I got the kitchen sorted by late afternoon and then made a start on my bedroom. But after several more hours I was in so much pain, my back and legs were so painful, I had to take cocodamol which allowed me to carry on for a bit longer before we called it a day and ordered food. I was surprised at how well I managed, I almost felt normal during some parts of the day! But I was paying for it the next day.

I couldn’t sleep again, even though I was exhausted! And I woke up feeling very symptomatic, I had no energy and felt very dizzy and extremely tired, I wasn’t able to do much that day so I spent most of the day on the sofa while my partner did some more unpacking and ensured I had a jug of water nearby, so that I didn’t have to get up. I have also hurt my wrist, most likely by carrying things and the weight of the boxes has over extending it without me realizing.

I’ve been up and down like that over the rest of the week, some days I’ve felt really good and got loads done, but other days I’ve felt like crap and couldn’t do very much. My mood has also been varying almost as much as my symptoms! This is something new to me and I’m still trying to figure it out, as well as trying to identify the cause.

I love our new house, it’s much bigger then our old one with a garden and decking on the river and it was worth suffering in order to be able to move here. I also got a new job! I really didn’t think I would as I applied on a whim, but they rang me when we were moving and said I got it! Looking forward to starting as I’m hoping it will be more suited to me as well as being more stable, regarding hours.

There’s not much left to do now in the house and now that I will be starting a new job soon, I’m hoping that my mood will start to stabilize as well as my health! But I never can be sure with this illness!

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