Getting back into shape

Hi everyone sorry it has taken me a few weeks to write another blog but I wanted to have something to write about.  Over the last few weeks I have been attempting to recondition my body. There are two reason for this one due to my pots symptoms at times I can be bed ridden for a few days and most of the time just do not have the pure energy to exercise so I have put on weight which I thinks adds to me feeling depressed as I am not happy  In my own skin . I also do have to take responsibility for my weight gain when im or cant go out take comfort in ice cream.  Secondly after doing a lot of research on pots I have seen that in America (they could have this programme in other places in the world) there is a pots re conditioning programme called Levine protocol programme which is a an exercise program designed specifically for POTS patients by Dr. Benjamin Levine from Texas. The programme has had good success rates and I have read many other pots suffers blog who have undertaken the programme and all say it has helped them in some shape or form. I believe that the programme involves patients use gym equipment which can be used sat down such as a recumbent bike and rowing machine.

So as I said I decided I wanted to get re conditioned and see if it has any help on my pots symptoms. On day one I did try going to the gym and using the rowing machine and the bike but after 15 minutes I felt so dizzy and the chest pain started so I gave up and went home feeling really angry at myself that I could not even work out for 20 minutes without my illness taking over. I was so upset I went straight on the Pots Facebook page and asked some of my friends on the site what I should do should I quit or carry on and potentially make myself more ill. I got some really good advice that maybe I should try swimming to start with and maybe take yoga or Pilates class to help build my fitness tolerance back up.

So two day later (I was really ill the day after I tried the gym out I literally could not get out bed) I took my swim in ages and it felt amazing I felt so weight less and light I didn’t want to get out. The first time I swam I could only do about 5 laps, and that is with me really trying, but now two weeks later I can manage 11.  I am actually really enjoying swimming I feel that not only is it helping me re build my fitness but when I am in the pool I really forget that I have pots as I am not dizzy which I normally am all the time.

I also had my first Pilates class last Wednesday and that was really good it also helped that all the moves are performed on the floor which Is great.

I have to admit  my symptoms have not decreased since I started swimming I don’t actually feel like my pots has improved but I do feel a little better in myself and right now I can work with that right now.

Update on my medical well being

So as I mentioned in my last blog I have been feeling really anxious and depressed lately and I think it due to the fact that I have nearly had pots for a year now and I am starting to realise that this disease is never going away and the old me who used to have all the energy in the world has gone. As I am actually writing this I feel sad as I like so many others wake up every morning hoping that today will be the day I wake up and I’ll be back to normal but every day I wake up with my head spinning. I think this illness is also starting to push me away from my family and friends as at time I think they forget im ill because I look well. I feel at times like no one know or cares how much I am suffering I honestly would not wish this illness on any one not even my own enemy at times it can be so lonely, I think that’s why I love swimming so much because when im in the pool I forget about everything and just focus on swimming which right now is what I need.

On a greater note I have now successfully finished completed my second year at university which is something I am greatly proud of this year has been one of the hardest years of my life and the fact that I didn’t give up my education is something I am proud of.

I will as always keep everyone updated on my progress and below are some link to some websites about the pots exercise programme.

http://www.texashealth.org/research-spotlight

http://www.chop.edu/service/cardiac-center/heart-conditions/postural-orthostatic-tachycardia-syndrome.html

https://www.youtube.com/watch?v=faScrmgKcWg

sorry its taken so long

                                Up date

I have not updated my blog for a couple months due to reason I will explain, so I thought I would start with a update on what I have been up to.

My pots has up in till last month been really bad, I was collapsing up to 4 times  a week, I was contently dizzy and my chest pain was starting to scare me as at times it was so bad. There were times I could not leave the house as I was just so dizzy. My GP was really good and decided it was time I got a wheel chair to help me get out the house and help me with the collapsing(I do not need to use this all the time just when I need it). She also referred me to the occupation therapies. The OT has been really good and order me some equipment such as a kitchen high stool and bath rack and mattress attachment which raises my mattress to help me get out of bed and also help with the dizzyness. I am actually surprised how much of a difference these equipment’s make, I feel that I can now have a not normal but better quality of life.

Due to me collapsing more regularly I went back to see my cardiologist who suggested that we try out ivabradine again (for those of you who read my blog will know this medication is used mainly In the uk to help with pots). I am on a low dose and it is also helping to reduce my symptoms while it does not fully take away my pots symptoms it does help take the edge of.

One of the reason I didn't write any blogs in the last few months is I started a new job which as well as going to university was extremely time consuming and made me drained most of the time. I was so determine to work that I didn't think of the effects it would have on my body. I was ill most days and would struggle to work with the consent dizziness. After 4 month I woke up one morning and my pots was really bad my heart rate was through the roof, I think my body just had enough. I spoke to my GP and decided that right now my body just could not cope with working and studying, and that collapsing at work was a health risk, so I decided give the job up. I have not been working a week now and I feel a bit better, im defiantly not so tired and my chest pain a little less painful.

With regards to university I think I am going to take a year out to try and get my pots under control I think at times I push my body to hard and don’t realise my body is not the same as it was last year. I am consistently walking around dizzy and with brain fog and at times it make’s me really depressed. I have also decided to give anti depressions another go as right now I am  not feeling myself at all. I don’t want to go out because of the dizziness and the fear I will collapse. So I am hoping these might just help me regain some of my confidence.

I have also decided to add some light exercise into my life as I have spoken to many individuals on the pots facebook sites and many highly recommend so light exercises.

Any way I will let you guys know how the exercise goes and I promise I will try and update my blog more regularly. I hope everyone who reads my blog is having a lovely weekend xx  

disability benefits

Sorry I haven't written a blog since October, I've been having a really bad pot stays lately and was also recovering from my heart procedure which I had my atrial fibrillation. My procedure went well and I'm hoping that it has now cleared up my heart arrhythmia and I will not require another one.

I have decided to write a blog about my experience of accessing disability benefits  which people with pots can access. I feel that not enough information is given by doctors about which benefits we can receive. I was made aware that I was able to claim any benefits to help me live with my illness. I actually found out through my Facebook friends that I was able to claim disability benefits. I feel that in the UK there is a stigma about people who claim benefits. I was worried that I would be judged by others.But after speaking to family I realized that I really am sick and that receiving disability benefit could help improve my quality of life.

In the UK disability benefits has now become PIP allowance with 2 different aspects one is a care aspects and the second is a mobility aspects. Both the care and mobility aspects have to levels of payments that can be awarded. I was awarded the higher mobility aspects but not the care aspects.

PIP Allowance

The process of claiming PIP took me four months. The first step was to phone up DWP for a application pack. When you receive the pack  It will contain a questionnaire which asks a number of questions about how your illness affects your life and what things your illness restricts you from doing . After I submitted my questionnaire and evidence from my doctor I was sent to a face- to-face interview with the nurse. This again took around the two months to  get  an appointment with  but the appointment was close to my house. When I saw the nurse I told her how an average day of my life is and I explained my symptoms of collapsing chest pain and dizziness to name  a few and had to tell her that when we have really bad pot  days they are very bad and can leave me  bed bound for days . It is really important that you express how bad the symptoms can get. I actually found the nurse to be very well trained and really understanding.

After  I had the appointment with the nurse I waited another 2 months to receive a decision that the fund DWP which I do think is too long.  As I mentioned I was awarded the higher mobility allowance which has really helped improve my quality of life. I now realize that I deserve to get help I really am sick and right now am really struggling with pots.

I have all so recently applied for carers allowance as my pots has started to get worse and am finding it difficult to do things around the house by myself and get out by myself. I feel that soon I will be needing a wheelchair or a walker to help get around as my dizziness is getting worse. I  feel  like I am losing my independence which is hard as I am finding it more and more harder to look after myself and do normal things that  I took for guaranteed.

For any parents who have children who have pots you are able to claim the benefit on behalf of your child and the process is the same but you will fill out the forms for them.

To all my American readers you are entailed to claim disability it is a much longer process than In Uk from what I understand and you may have to get a solicitor involved but if you feel you  need it, do it because you deserve  help.

I would also like to add that for people who live in the uk and have children there are clubs for young carers run by your local council that your children can go to. My children attend and love going as it give them time away from having to help look after me and also get them playing with  other children whose parents have illness my children go on trips with the group in the holiday as well s more thano it helps me not feel so guilty when I am too ill to go out. 

Update

Update

Hi guys so I have not updated my blog in a few weeks so I thought instead of choosing a topic to write about I would give you a update on what being happing in my life, with regards to POTS,Af  and how I have been coping.

Uni

So as many of you who will read my blog will know I have decided to carry on with my second year at university. When I made the choice to go back in September it was due to the fact that I really wanted to go back to study  and I really didn’t want my Pots or AF to get in the way of my studies.

Well I don’t think I really estimated how hard uni would be now that I have these conditions. I am actually finding it really difficult ,as many of you know with Pots and AF you have really good days and then you have bad days and at times the bad days can be really bad. There have  been  times when my dizziness has got so bad I have had to leave the class as feel like I might collapse. I have really tried to attend all my classes as I don’t want to fall behind, but I think all the stress is actually making my pots worse as I have to push my really hard which at times can be challenging

I have been lucky that student finance pay for me to get a taxi to uni and back home which has been really helpful and takes the stress out of having to travel on public transport.

I am still going to try and continue to stay at university, but I am going to start to look after myself a bit better and if I need to take a day off I will take that day off without feeling guilty.

Cognitive behaviour therapy

I have now completed a 12 week course on CBT in regards to helping with my anxiety and do not actually think that it has worked for me. One of the reasons me and my therapies discovered it was not maybe going to work is due to the fact that a lot of the internal symptoms of anxiety are actually the same as the symptoms I receive for POTS.

While I didn’t find the course actually worked for me I really did find it useful to talk to someone once a week about the how I was feeling regarding my illness and also just generally how I was coping. As I found this useful my therapies felt I would benefit from a course of counselling which I am actually looking forward to.

Health

With regards to my AF I am actually in hospital at the moment as I am having ablation on my heart tomorrow. I have been going in and out of AF more frequently, so this is hopefully going  to help. I am actually really nervous about having the procedure as I think I am worried it will not work. I have tried many different types of medication for POTS and AF  that I hoped would  work and then they didn’t or my body didn’t tolerate them and this made me lose hope that I would get better. While I am aware that there is a chance that the producer may not work and I may require another ablation at some times on the future, I am praying that it will be successful.

With regards to Pots I have been having some really bad days this month the dizziness has been really been and has been making me feel a little depressed.  I have realised that with pots I can have times when I feel that this illness is going to defeat me and then I have goods days when I feel like this illness is something I can overcome.

I think that I need to give myself more times to come to terms with POTS as I was only diagnosed in May so I need to take time to really get to know this illness as so to speak.

I have decided that my next blog will be on exercise so when I get out of hospital and am better I will be attempting lots of different pots safe exercise and let you all know how they went.

help with anxiety and depression

hi guys i thought  i would write this blog as I have recently been experiencing high anxiety and depression due to my illness. At times i feel as through i have no one to talk when i am  anxious and this in turn makes me feel extremely depressed. I have recently came across two really good websites that are helping me come to terms with and manage my issues.
The first websites is called https://turn2me.org/ i think this website is fantastic as every week night it offers free group online chats with a therapist  and  9 other people regarding issues such as bereavement, anxiety and depression. You have to book on the group and there are limited places but i find it so refreshing to talk to people who you dont know and will not judge you. There is also the opportunity to have one 2 ones online counseling with a therapies but i have to add that this is not free is is £25.00 for 90 mins.

The second website is called https://moodgym.anu.edu.au/registered/login. This website is like a free online course to help deal with issues such as low confidence and anxiety amongest other. This course reminds me off my CBT class but with out the therapies, i cannot recommend this website enough.

As mentioned in a previous blog i am at the moment taking part in CBT in order to help with my anxiety. Since taking it i have realized how badly being effected with POTS and AF has effected me. I feel at times people dont realize how much it effects you, and how over night your life is changed and  you have to adjust to becoming a new person. I will honestly admit that i have found this really hard and it has made me depressed i am trying really hard to dig my self out of the depression and start a new journey in my life.
I realize in my self that there are issues that i have not dealt with for example my dad dying at such a young age and i believe that this has greatly impacted on my Anxiety  as i am scared i will have the same fate as my dad. My first god child also died of cot death as a baby and i am only now coming to terms  with the fact that she is not here and the pain my best friend goes through every day .  Actually my best friend Zoe give me strength and shows me that things will be better. Since the death of her daughter she has gone to university and made a success of her life, she has given  a beautiful god son who i adore. And while she was doing all these amazing things she was grieving for her daughter. I am so proud of her and i hope that in time i will be able to be like her and make the best out of a bad situation. With time i hope that with the help of these website and talking to people about how i feel i will stop these negative thoughts and try and be the Tamara that my friends love.

i heard this really good quote today that my teacher        put up in the end of my class and i just wanted to share it with you guys
yesterday is History, Tomorrow a Mystery, Today is a Gift, Thats why it's called the Present"

feeling kinda rough

Hi guys I thought I would write this blog to take my mind of the way I am feeling. I have been having a really rough couple of days, yesterday my sister found a new place to move into meaning that I will be home alone. I have not lived on my own since I was diagnosed and it is starting to make me really anxious and worried.

Today I have had a really bad pots day and my friend was like you like fine, I felt like screaming just because I like look fine, I’m not, inside I feel like an emotional wreck. It really annoys me when people say that, just because I look fine does not mean I am ok at times it makes me feel like people think I am lying about feeling ill.

And to top it all off I started getting sharp chest pain on the bus I literally thought I was going to have a heart attack it was so scary, I have had chest pains before but not like that. So I called my doctor and he said he thinks they are called Precordial Catch Syndrome. I literally didn't know what this was so I found a good email site which I will post below and found that they are harmless and do make you feel like you are having a heart attack which is really scary.

I am also feeling really anxious since come of the citalopram and am debating being but back on them. I believe that the anxiety is coming from the fact that I will be living alone and it’s a really scary situation for me.  If anyone has any advice on living alone any tips would great.

I also found a really good you tube video posted by a team of cardiologist about AF and they do discuss other issues. I think you guys would find it helpful

  http://syndromespedia.com/precordial-catch-syndrome-treatment-symptoms-causes.html

http://www.youtube.com/watch?v=BZ1vMLPrHnk

Sorry about my rant I just feel at times I can only express myself through my blog 

Help with going to back to university

Help with going to back to university

Hi guys so I thought I would write this blog as I know that there are a lot of you who have emailed me about wanting to go back into education but fee like that your pots well hold you back.

So I decided to that I would go back to university this year. I was concerning taking a year off from uni but when I spoke to my tutor at uni he told me that student finance can help me complete my studies. So I called student finance England and they sent me a disability application form. The form was really easy to fill in, and all I had to do was get a letter from my doctor to statue I had pots. After I sent the application off and it took around 3 weeks for me to get an appointment with a disability adviser which I thought was really good. So the disability specialist was great he knew all about pots and came up with some great things to help me stay at uni.

 He has arranged that I can get a taxi to and from university so I don’t have to travel on my own and I received a computer and printer with different programmes on to help me such as a book reader. I will also get a mentor who will correspond with all my teachers when I am too ill to go into uni, and have the class recorded on a Dictaphone so I do not get behind with my studies. I really believe that with these measures put in place I will be able to successfully l finish uni and all these things are free so I do not have to worry about the cost which is great.

I am fully aware that this year at uni is going to hard but I really want to try and get back to normal and I do not want pots to hold me back any more

I am really sorry about any spelling mistakes I have made usually where I am dyslexic my sister will spell check it for me but she is not here today so I had to try and do it myself.