I had the idea to write this blog some time ago but just never got round to doing it but am beginning now. I want this to be a really honest look at how life is for me and how it affects my walk with God and my day to day life. I will try and be as honest as I can and this is where I can let off steam and be real. I will try and be honest about all aspects of my life even if they are embarrassing. I hope that people will see that it is honest and real and like it.
I should introduce myself. I’m Tasha, I’m 34, am a Christian and suffer from M.E., fibromyalgia, POTS (postural orthostatic tachycardia syndrome), other autonomic dysfunction, PCOS ( polycystic ovary syndrome), IBS, left pelvic kidney and possibly EDS type 3 but not diagnosed with that yet. I live in Reading, Berkshire, England, with my cat Merlin who is almost 2 years old and I love him soooo much! I wanted to do this blog so that people can see how life is for someone who suffers from severe chronic illnesses and is a Christian. I was in denial for quite a while but am trying to be real now and thought this would be a great way of getting stuff off my chest and sharing with people how my life is. I will apologise now for the spelling mistakes, punctuation mistakes and for using the wrong words. I get a thing called “brain fog” which means that your cognitive abilities are impaired. The level of it differs day to day and hour to hour. Sometimes I get words muddled up, slur my words, my short term memory is almost non existent, get distracted in the middle of a conversation etc etc…
I should share a bit about me and my illnesses. I have always had a bit of a rubbish immune system and got things like whooping cough, measles, chicken pox and all the usual childhood illnesses. I was a very ill baby as my Mum has epilepsy and I was born with those in my system. I almost died twice as a baby but was revived and they couldn’t find out why. One of the meds that my mum was on is called sodium valproate and back then they didn’t know it caused birth defects and so I have only got 1 kidney. My left one is on my pelvis somewhere and shrivelled up and dead. This happened when I was in the womb. I also blame my dodgy immune system on this too. I have also always had problems with my joints and muscles but growing up I thought it was just normal and due to an abusive childhood I just kept quiet about stuff so my biological dad wouldn’t have any reason to kick off and hurt me and Mum, he was a violent alcoholic. When I reached my early teens I developed problems with my feet where the arch would collapse and instead of going in would pop out in a lump and this would cause all the muscles in my leg to spasm and cramp and was so painful. We were told that my muscles didn’t grow at the right rate or something and I had to have special arch supports and do exercises each day. It got me out of PE whenever I didn’t want to do it as I would lie and say my feet were playing up lol! You would have thought this would have been the ideal time to mention my joint problems, especially my hips but for some reason I didn’t. My Mum was married to my step dad by then and I call him Dad. I also have a step brother called Matt but I call him my brother. As I have said earlier, my immune system is pretty crap and I used to get bronchitis every year starting at 20ish. I can look back and see POTS symptoms from my teens but it was mild and when I told the doctor I was told they were panic attacks. I developed gall stones about 8 years ago and were told that I had ibs or heart burn wheni would end up in a+e and it wasn’t till a couple of years ago after moving to Reading that they discovered that I had gall stones and a pretty scarred gall bladder so that explained all the pain I’d been having. When I moved to Reading I started an access course in midwifery but due to the pain from the gall stones and after collapsing in the loos I was chucked off the course. This was before I was diagnosed. I was doing training and doing various things at the church I was at and also doing voluntary work at a charity that does advice for crisis pregnancies and counselling for people who have had abortions or miscarriages. 3 years and 2 months ago I had the flu jab at my doctors and within 24 hours had what I thought was terrible flu. I never recovered and that was the beginning of the ME. I was also told I had fibro after I saw a doctor when I was visiting my parents and he was very experienced in ME and fibro and he pressed certain parts on my body and told me I definitely have fibro as well as the ME. I was only diagnosed with POTS a year ago. I had been doing lots of research on line and discovered that quite a few people with ME had this and so I looked at the symptoms and they fit so I asked my GP to refer me to a cardiologist that understood POTS. Most doctors have never even heard of it so I had to take info into my GP so he knew what I was talking about. I saw the specialist in March last year and was diagnosed and I am now waiting to see an autonomic specialist in London but it is about a year’s waiting list and I have only done half so far.
Since I got ill I have gotten a lot worse going from walking with a stick at first to being a wheelchair user and spending about 90% of my time in bed. It’s really difficult and I eel like th eillnesses hav stolen my life and that I don’t live anymore but just exist. I lost a lot of friends hen I became ill and everyone who I have spoken to on forums and groups have also lost friends when they became ill too. The church I was in didn’t handle my getting ill very well and I was subjected to what I have come to realise was spiritual and emotional abuse. I was abandoned and when I said that I was lonely and needed help and support, I was told that I needed to make more of an effort and that what I wanted from a church was unrealistic. I knew it wasn’t as I had grown up in a church from 9 years old that really was like a family and was supportive. I also had people tell me that I was ill because of lack of fait or unforgiveness or hidden sin. I had a few months where I hadn’t been to church as not well enough to do mornings anymore an dthey had no evening service and instead of them checking on me, it was just assumed that I had left and there were lots of rumours about it. I had been involved in starting a ministry and had undergone leadership and evangelism training etc so it wasn’t like I wasn’t known, I was part of the wider leadership team. When I heard that everyone thought I had left and no one had bothered contacting me, I decided that I would leave and so I started trying a few churches that had evening services. As soon as I walked into my church, I just knew it was where God wanted me. The people there were so welcoming and they love me for me, not what I can do I have been looked after, encouraged, challenged, supported and it really is like a family. My confidence was so low by the time I got there and I was living under this false guilt that had been spoken over me and because my old church made me feel like it was my fault but slowly I started to trust and to let people in. When I had my gallbladder out, it caused a massive flare up and I was stuck in hospital for a couple of weeks. My church family were amazing, people fed my kitten and played with him, they came and visited me, bought me stuff, prayed for and with me and were just wonderful. I feel so blessed to be part of this church and am so glad that God led me there.
When I had my gallbladder removed they decided to keep me in overnight as I had ME and they knew it would be harder for me. However it really affected me badly and I needed 2 nurses to help me onto the commode, couldn’t walk at all and was os so poorly. the time I was in hospital was one of the most traumatic experiences of my life. The first ward that I was on had one nurse who was quite deaf and you had to shout for her to hear. I was so weak and couldn’t shout so it was quite difficult. The doctor decided that he didn’t like the meds that I was on for the E and fibro and halved my dosage without telling me so I was in agony nd having withdrawals. the nurse said that the dose I was on was higher than the maximum dose allowed which I knew wasn’t true an di had a fight to get them to reinstate my proper dosage. I was also accused of being an addict and laying it on thick to get the drugs. I had orimorph at home for when the pain was so bad but they refused to allow me to have it. I am very sensitive to lights, sounds, smells and being in hospital was the worst place for me. I was moved to the second ward and it was a noisy busy ward and the staff there had no idea about ME apart from 2 nurses from Ireland who were amazing and they had both had experience in neurology and so understood about the lights and stuff. the other nurses thoug again had no idea and one was particularly nasty to me. One morning I was physically unable to talk or move and she came over and asked me why I was not up and eating my breakfast. I couldn’t answer and then she said that I should go and have a shower and when I didn’t answer she told me I was really rude and she had no time for patients like me. One of the hCAs came over and asked if t was my ME and communicated through me blinking. She then gave me a bed bath and was very gentle and lovely. Another day I could feel a sensory storm coming on. That is when I have been exposed to too much sensory stuff and it overloads the brain. I can only describe it like you are in a cave and every tint noise echoes and seems a hundred times louder than it is. You cannot move, talk, communicate at all and are lost n the cave in pain. It is a very frightening thing. My riend were there with me and I was lying in this and having quite bad muscle spasms which were making me twitch a lot and my friend massaged my arms and legs for me and they both prayed over me while I was like that. I had been asking for morphine for the pain of the spasms and joints and been refused and they were no use with this either and it was a weekend so they couldn’t get a doctor to come for hours. There were other examles like this too. I was waiting for a place at a respit place where I would be looked after and have physio every day but after over 2 weeks of neing in hospital I knew I was just gonna keep deteriorating so I persuaded my OT and physiotherapist both of whom were wonderful, that I could go home with carers coming out 3 times a day.
I will now tell a bit about the 6 weeks of care that I had. Well it was a pain as I had no spare keys so would have to pass the keys out the bedroom window to the carer when they arrived but they didn’t all know this, lack of communication, so they would be banging on my front door for ages lol. One that came was terrified of cats and saw my kitten and freaked out. One was really rude and said that I should make myself do stuff and that I should be grateful that I have arms and legs to hurt because some people don’t. I complained and ended up with her every day even though I said I didn’t want her. I didn’t dare complain again as I felt I was being punished for the first complaint. After 6 weeks the care stopped as it was only intermediate care an di was left to cope alone.
I must say that social services have been so so good with giving me equipment to help. I have a perching stool to sit on in the kitchen, grab bars dotted about, bed rails, riser recliner armchair, pillow lifter and special bath cushion that lowers and lifts you in and out of the bath. I don’t get any care though and am having another assessment on Tuesday and am gonna beg for some care as I am not coping at all but I know that there have been lots of cutbacks so it is difficult. I also have a manual wheelchair from the NHS but I have no one to push me and can’t self propel very far at all andit is agony to. I am going to apply to a charity that give people electric wheelchairs as you just can’t get them on the nhs anymore with the cutbacks so hopefully the charity will let me have one of theirs. I also have a special mattress form the nhs as I was beginning to get bed sores and it has helped loads and is so comfy.
I live in a council place and it is a studio flat and so is very small. It cannot be adapted for my wheelchair and so I spend most of my time in bed. I fall a lot when going to the bathroom or kitchen or wherever. I fractured a pelvic bone in November or December time which was very painful. I have been fighting the council for over 2 years to be moved but up until recently they were ignoring all the medical evidence and saying that I wasn’t a wheelchair user and didn’t need moving. I contacted my MP and he managed to get them to look again and I am now in the correct category for a wheelchair adapted place. I have to bid on properties that come up for rent and are suitable but I have not been successful so far but hopefully will get somewhere this year. Living here is dangerous for me and it means that I am not able to cook more than twice a week at most and so I live mainly on snack food which is not healthy. I struggle with personal care as well and don’t do housework so the place is usually a tip. I hate living like this and get very embarrassed.
I do try and get to church on a Sunday night but am not able to get there every week and not at all during a flare. I have a charity called readibus that collect disabled and elderly people from their homes and take them to where they need to go and then take them home after and is a free service. They take me into town on a Wed afternoon for 2 hours if I am up to it. they take me to shop mobility and I swap my chair for an electric one and go round town getting a few bits of shopping and sorting money stuff and then treat myself to a costa. I get very ill the next couple of days but I do try and go every fortnight if I can just to get out of the flat.
Well I can’t think what else I need to tell you, that seems to be everything I can think of. The following posts will be about how my day or week has been but this was just to let you know some back ground stuff. I will be keeping this as honest and as real as I can and will try and make it a warts and all account of my life with illness. There may be some swearing, and I will try and be honest about all of my medical problems even If they are personal and embarrassing. I will try and be honest about how my walk with God is going and how I aam feeling. I know that God has big shoulders and he can cope when I am angry or upset with him and knows how I am already feeling before I say it lol so I may as well be honest about it.
Bye for now and I hope you will keep reading my blog. God bless you! xx