So last week I fainted, this is not something that has happened to me since I was 17 and saw Blur in concert with my boyfriend Andrew Edmonds….so yeah it is not something that happens! I went from feeling pretty good and getting ready to do yoga, to extreme fatigue and my hubby calling the paramedics!
I spent the rest of that day asleep because they did not take me in to have any tests or anything, the next day I went to my GP. She took my blood pressure which she said was low and told me to drink more (I drink 2 liters a day) and to exercise more even when I said I take my dog for short walks and do yoga when I can.
I am now on the verge of tears all the time and last night I cried myself to sleep, the doctor I was under for my anaemia was meant to see me again in December to check on me after doing an Endoscopy and Colonoscopy earlier this year. But I got a letter saying that they had to cancel that appointment and will instead put me on a waiting list!
I guess I am just sick of being so sick and no doctor seeming to care, and if one more person says if they are not worried you shouldn’t be I will scream! I want to know why first I became anaemic so suddenly and now have low blood pressure and what they are planning to do about it. I cannot carry on feeling so tired, so dizzy…pain I can work through but this is impossible! I feel a waste of space and it is really getting me down.
I am really trying to keep going I just wish I could stay positive when everything feels so useless
Well the last few days I have found myself tired very very tired. Each day I say I am going to get up and do yoga and meditate and do housework and then I find myself unable to wake up with the alarm and so tired all day I just want to curl into a little ball and sleep.
This is one of the many problems with chronic fatigue and fibromyalgia that people don’t tend to talk about and that is the intense want to do things. It isn’t like when you get home from work and plop down on the sofa and watch TV exhausted…it is more like that times by a million and on top of that you want to go out with friends, or just tidy up the house.
Fatigue was once explained to me like this…imagine we all have a rechargable battery inside us and it charges every night while you sleep. That battery has a whole day’s worth of energy in it. However if you have a problem like chronic fatigue syndrome, or fibromyalgia, etc, then this battery only recharges once a week. So I have a day’s worth of energy to last me a week so I need to plan everything very carefully but even then sometimes your body is just over tired and you cannot concentrate or think straight you are so tired.
I am finding though that because this increase of fatigue as well as my depression have left me gaining a little weight and feeling like a useless lump. It is a viscious circle where you want to do things to help out like housework or exercise but instead you end up sleeping which makes you depressed which makes you more tired and then you end up just feeling a bit crappy.
So right now I am trying my best to fight through and though it is incredibly hard I am determined to keep exercising as much as I can and doing as much to help out in the house as possible. I feel a bit demoralized and defeated but I think many people with chronic illness feel the same way, it is a part of long term illness that people don’t tend to think about. It is all about physical symptoms but as people we want to contribute and be a worthwhile part of society, so include people with illness into your life because they want to go and have fun and go shopping and all sorts of things….we just need a little help.
This is a sort of review sort of update…so I have been having a lot of back pain recently and it has been hard for me to sit up for long periods at a time. I am waiting for ultrasounds to my shoulders and physiotherapy appointments and it is just a bit of a nightmare when you are in pain and just want help now.
So my yoga teacher who is also a beauty therapist and I thought maybe a back massage would help and to be honest I knew she was right as well as being at a point where I would do anything to help the pain. I have had a tough year and the stress of everything is being held all in my jaw, neck and upper back and I knew it was probably something I needed to deal with.
I love Amanda’s studio it is so calming and always smells so yummy because of all the oils she uses and I always feel safe there I know I am in good hands. She found as I suspected that my upper back muscles were very tense and as she worked them it almost felt like pebbles under my skin they were that hard! She suggested I have this regularly to stop this happening again and I definitely think it is something I am going to do because she managed to make my muscles relax to the point where I have full range of motion in my neck and a lot less pain in my back.
I got home and slept for about 4 hours, and then slept really well that night too! I could tell that the mixture of oils she had chosen had released a lot of tension I was holding and after drinking a lot of water I could see the massage was clearing out toxins from my body too. I did feel a little like the Hulk had done my massage after the nap but by morning that was just a dull ache to be expected after how much my body needed it.
Overall I am really looking forward to having this a part of my monthly routine to try and keep my body as supple as possible and to keep battling this illness!
First of all I apologise for being a day late in posting this I am struggling with a headache that will not go and I had the day offline to rest…it didn’t work but it was worth a try!
So my depression this year has been hell I am not going to lie I started the year really unwell, then my grandad passed away and since then I have not been coping at all well! I have been trying to keep doing my yoga and eating well but in all honesty it has been sporadic at best!
Now I feel like finally my meds are starting to kick in and I am beginning to see a glimmer of my old self coming back. I have started to want to plan what I am making for who for Christmas presents, and to want to craft again as well as starting to set myself some goals for my yoga practice.
These are big things anyone with depression or has had it even for a short time will know how hard it is to want to look forward or to plan anything at all. I was dreading my first Christmas without my grandad and now I am starting to look forward to it, maybe it is because Autumn is here and the weather is changing so I am feeling more like myself? I am not sure but I do know that I want to keep building on this and keep stepping up and out until I am back to my old self.
Hey there everyone!
First of all I am really sorry for not updating as regularly or consistently, my reasons can be explained with two words…Pain and Depression.
One of the few things that keeps me grounded and makes me happy is yoga, I love it but over this year it has become harder to practice. I am having a lot of pain in my back and shoulders as well as crunching and knocking sounds when I move. The pain feels like I have been kicked in the middle of my back and radiates up and over my shoulders. I know it is fibromyalgia pain, but my doctors do not seem to care and that is leading to…
Depression…yep that old puppy is back and really not helped by constant headaches and stomach pain! I have still not received any results from the hospital blood test I had to see if I had celiacs over a month ago! I went to the doctor for my back pain and he did not change my meds or do anything and I asked two different doctors to chase up my results and still nothing!
The only good thing is my doctor did increase my antidepressant so I cannot wait until that kicks in! Anyway other than that there has not been much else going on, autumn has finally started my favourite time of year and I feel like a bear hibernating because I am in so much pain…
Hopefully next week will be better
So this past weekend I was at Heathrow near London for a convention for the TV show Lost Girl and some of the new shows that the cast is now starring in. You can get more information HERE
I have been attending Starfury events since probably around 2002 and I have to say over all the various event organisers I have gone to these type of events with they are my favoourite. The attendees are a priority and it feels more like a family than a way to just make money, it is clear that the people running the events are fans too and the people who have come as guests have always said they have felt it is more friendly and they get to know us better. I love Starfury and are more or less the only company I go to events with now.
So my weekend….
I got to the hotel about 3pm and met up with my friends Hannah and Caitlin and we joined the looong queue for registration, I have not seen the queue so big before and I really think they needed more than two people working the reg desk! I managed to get everything sorted thanks largely to my friend Helen who knew I would not be able to wait in a long queue again to get my ticket for the talk with my favourite actors who were there and I was so thankful for that! I managed to sort out my photo tickets and everything else pretty quickly and was so thankful for that, queuing is not easy for me and I was getting tired by the time I had everything sorted.
I then had a nap and some food which helped me to recover ready for the party in the evening, the theme was Blame Canada and after much consideration I decided as Lost Girl is a Canadian show I would just dress as a female version of Vex my very favourite character and the actor Paul Amos was at the event!
Now this night I drank too much alcohol and had so much fun #noregrets! Paul Amos turned up at one point in the evening with doughnuts and crisps which he gave to us! I was so happy to see him I have met him once before and he is such a lovely man so mischievous and fun and yeah I just adore him! We went to bed about 2am I think and after some more food and water I slept well thankfully because I knew Saturday would be a full day!
I woke early and had a shower and a yummy hotel breakfast I was running on adrenaline already because I was going to be meeting all the cast and with that in my head there was no way my illnesses were going to hold me back! First thing on the list was photographs, now I was on a budget for this convention and I knew I would have to be careful so I basically decided to concentrate on Tim Rozon and Paul Amos so I had a picture of them on their own and then one of the both of them (they are illustrating this post).
The staff at Starfury I have known for years and they know I do not take advantage so they are always so kind to me. I got to go first and I was so thankful because of my struggling with waiting hours in a hot room with lots of people with my anxiety and pain levels.
I went and had my picture alone with Paul Amos first, he was in heels which is the sexiest I mean any Rocky Horror fans will know Tim Curry and therefore find men in heels sexy… so the photographer took about 6 photos of me with Paul because he was trying to get his heels in shot. This was my only complaint that they did not give me a choice of which one I wanted, I paid so I feel like maybe I should have been able to choose. However, the photo I got is so cute I just adore Paul and yeah I was more than happy.
Next was a photo with Paul and Tim, Tim was a lot more reserved than Paul, most people are, but it was his first convention in the UK and I am not sure he knew what to expect. I was so happy when he said he liked my shirt which was the Batman symbol but as a mustache instead, he plays Doc Holiday on the show Wynonna Earp and his tache is pretty epic on that! Both pictures with him he was pointing at the symbol and it was so cool to know he got it!
After that we went to the talks, these are the guests in various groupings on stage answering questions and telling stories, it is one of the best parts of the weekend for me. For one it gives me a chance to rest and just chill out, plus we get to hear stories from set, behind the scenes facts, and funny jokes between them which is so cool! It is so fun and they had the main hall set up the best I have seen for wheelchairs I was really happy to have a good view and to not be crashing the Gold ticket holders in the front rows!
In the early afternoon I had paid for a small group to just have an informal chat with Tim Rozon and Paul Amos, they played father and son on Lost Girl but it worked out for me because they are my faves! The talk was so nice, I swallowed back my anxiety and spoke to both actors, I contributed and chatted and I felt so proud of myself for it! I got to listen to Paul speaking Welsh which was so so so sexy and to tell Tim why I love Doc on the show!
By early afternoon I was in a lot of pain, but I try to do everything on the Saturday so that if I am not well on the Sunday I can rest. So last thing was autographs! I managed to go through with the gold like they had agreed and everyone was so nice helping me to get everything I was so thankful to the staff! I had nice little chats with Aaron, KC, Tim and Paul, but Paul was the chattiest I could tell all the actors were suffering with jetlag bless them! Tim wrote I was the girl with the most beautiful eyes which made me giggle and Paul was so chatty and even promised me a dance at the party later!
I then had a long nap before getting ready for the party, tonights theme was Misfits of Science so I dressed up as a sexy Ghostbuster…because why not? Paul, Kris, Zoie and Anthony came to the party in the evening and I loved watching them all having fun…especially Kris who was lifting people like he was Patrick Swayze in Dirty Dancing and so funny when drunk! At one point Paul was dancing not far away so I got out of my wheelchair and went over to remind him he owed me a dance, he got so excited and hugged me and I got to dance with him twice which was so kind of him! He also came round at one point with bottles of booze everyone was taking shots out of…would have been rude not to! I even got to take a selfie with Paul he just made my night and I love him so much for being so kind to me.
Sunday I slept in until about 10am I think because things were not starting until 12 and I was in so much pain! Thankfully after meds and a hot shower I was able to go to see the talk with KC, Tim and Paul. This was such a funny talk I really enjoyed all the talks and though I was tired and not feeling well by this point I was just happy to be entertained and to rest.
I had a nap in the afternoon too after a cheeky McDonald’s and got dressed up like a saloon girl ready for the party that night which had the theme of The Wild Wild West! The closing ceremony was so sweet I caught Tim’s eye a few times and shared a smile moments like that always mean so much. I was pretty much a zombie by this point and after the closing ceremony we went back to the room and I lay in full costume on my bed and tried to rest.
I felt like someone had kicked me in the middle of my back from sitting in my wheelchair so long all wknd and I was exhausted and ready for home by this point. Hannah and I went down to the party but we lasted about 20mins before heading back to the room, packing and eating and getting some sleep.
Overall it is one of the best convention wknds I have had and I thought the guests were all really nice and willing to have fun and make it special. I loved meeing Zoie finally she is a busy lady! However for me the weekend was all about Tim Rozon and Paul Amos. I am such a big fan of them both and they have me for life right behind them both!
So I am struggling at the moment and I have no idea what to do or who to ask and to be honest it is making me tearful and feel really down.
So I have been having digestive issues for a while now and a few months ago I had cameras everywhere to check I had no tumours or ulcers or anything like that which were thankfully all clear. However, those problems are still present and I am having a lot of stomach pains…
So about a month ago I went to a new doctor at Burton hospital to try and find out more and he said it could be Celiacs Disease which basically means you cannot have gluten. This would mean a big shift in my diet and so I have been trying to eat well lots of fruit and veg, lots of spinach and I bought a spiralizer so I can make Zoodles instead of pasta!
However, now I am finding my pain is getting worse as well as my fatigue so everything is off with me right now and I am really worried. I am still waiting for this doctor to send me the results which is so frustrating because they must have the results to a simple blood test by now! I am really getting down and feeling extremely depressed and confused. Why is a healthy diet so hard to figure out? Why is it taking so long to find out what is wrong? And what am I doing wrong now?
Basically I am going away with my bestie Hannah this weekend so no blog on Sunday but full update on Wednesday, we are going with hannah’s friend Caitlin to London to a convention for Lost Girl fans! I am incredibly excited because two of my favourite actors are going to be there Paul Amos and Tim Rozon so I am hoping it will lift my spirits and just help me to relax and have fun!
I am sorry this is not a cheery post but I am just not in a brilliant place right now take care everyone
Wow I had a busy weekend, it started Friday when me, Lee, my dad and his girlfriend Linda went to a shopping center here called Merry Hill…I call it Merry Hell but I am slightly strange lol! I managed to get some Funko pops, and a statue of one of my favourite actors roles from a video game he was in, and some make up brushes from the Body Shop. It was just a really nice day and I really enjoyed myself out with Lee mainly and we just met up with Linda and Dad for lunch.
I was exhausted when we got home and basically after a make up tutorial with Linda and a cup of tea I went to bed. It was a fun day but I didn’t want to get too tired because the next day we headed to Wembley Stadium in London on a coach to see Billy Joel!
Me and Lee are big fans of him and when we met online it was one of the things that we bonded over, and because of that Billy and his music is special to us.
Because both me and Lee struggle with fatigue and I get a lot of pain we had planned to go down for a few days, but plans changed and I won’t go into why but it was not our choice. The coach journey down to London took about 4 hours, no stops I just tried to sleep through it, but I was in pain and so tired I think if I hadn’t had sugar in the form of Krispy Kreme doughnuts and the adrenaline of seeing Billy we would not have made it through!
Billy was amazing live and the best I had seen him, I will do a full review of it tomorrow, but for now I just want to discuss my health and how it affected me. We did not get home until about 4am and it is now Tuesday and I am still in pain and so so tired! I never would have decided to do this in this way, because of my pain and my illness as well as the fact that Wembley had hardly any vegetarian choices! I am sorry but the venue considering it is Wembley looks like a prison inside and is horrible! The food there is pure junk and not nice at all, the veggie burger I managed to find was so hard to eat…basically no sleep, lots of travel and no food? It ruined what was an incredible concert but I shall talk about that tomorrow!
Right now I need to make dinner and take more meds…my life is ruled by tablets lol
Well last 2 days I have not been well, and before I tell you why I will preface this with the fact that my husband is an amazing carer and this has only ever done this once before in 8years together…
So Friday afternoon Lee sat down to do the weeks medication, and realised he had forgotten to go to the chemist and pick up my painkillers and iron tablets. Now it was late on Friday and there was no way to get there in time…this meant I had all weekend without pain relief other than Ibuprofen which without the rest of my meds is pretty useless against the pain I have daily.
By Saturday afternoon I was at about 8/10 on the pain scale and really suffering, all weekend I felt sick, hot and got hardly any sleep. To say the weekend was hell would be an understatement, and a lot of that is because I am on these meds all day every day and my body needs them. I was going cold turkey and now I have them again I can really appreciate how these small tablets I take without giving them much thought are needed just so I can cope.
It is hard to realise I need medication, as you all know I turn more to alternative therapies mostly and so I do find that I struggle to admit how much I need tablets and pain relief etc. However, I am so so thankful to be back on my medications and really appreciate how much it helps me just need to rest and recover now!
This week I also had a hospital appointment and I am waiting for results to find out if I have Celiacs Disease which basically would mean I would need to change to a gluten free diet. This would explain a lot of my symptoms that I have been investigated for as well as the Anaemia so I am looking forward to some answers hopefully. I am feeling worried about how to change my diet because a lot of vegetarian foods are covered in breadcrumbs etc however I am someone who tries to take care of my diet so I will certainly look into finding ways to cope with it should I have it.
So a lot going on with my health right now, but I am excited to get some answers and happy to have a new respect for my medication.
So me and Hannah have been friends for over a decade now, we met online doing something called roleplaying where we wrote on Myspace as characters from Buffy the Vampire Slayer…yes I am THAT geeky!
So she has come for the weekend to visit, we have not seen one another for a while and we have both had a lot happen in our lives. So we have not left the house, apart from a quick walk to try and find Pokemon, and we have basically non-stop talked.
Its lovely to have this chatting and catching up I rarely have anyone come and stay or visit though I always invite people. Hannah is always great company but time goes so fast and already she will be going back to London tomorrow!!! She has introduced me to some new musical theater though so yay!
I have had a good week overall and I am feeling positive, I am hoping to keep working on my grief for Grandad and just opening my heart up again and being more out of my own head. Life is good right now and most of that is me just looking more positively at things. Changing my outlook is really helping my anxiety and depression and if you want any help with this I have some books I can recommend so just leave me a comment.
I also bought a Spiralizer this week so I can make yummy salads and replace pasta sometimes and reduce the amount of carbs we eat…it all helps.