I haven’t written a blog post in quite a while now. I have started plenty but have not had the concentration to write a full post and have it in a state where it is ready to be posted. While I never proof read my posts I do like to make sure that there are paragraphs and spacing are correct along with having relevant pictures.
I need to be honest and open up about how much I have been struggling these past few months. My health has not been great at all really. I have kept it from most people as I just find it over whelming and hate bothering people when I know there is nothing they can do about it. What it has meant is that I really have not been taking part in anything from a PPI point of view, and even emails have been piling up. It has just been so hard and I feel awful for letting people down but I just have not been able to concentrate or focus. Mentally I am just not there just now.
So what has been going on?
Its difficult to put my finger on it but over the past few days everything has really come to a head and given me a bit of a fright.
From a respiratory point of view I have not been horrendous but have not been great. I struggled with a viral thing (not COVID) for a few weeks which has been widely reported in the press as one of the worst colds in a long time. It left me feeling so lethargic and fatigued to the point I was sleeping so much and walking around my legs felt like they were tied to concrete blocks. I was cold all the time and lost my appetite despite being on a higher dose of prednisilone because I was also suffering from a chest infection that I just couldn’t clear. After one course of anti biotics we did a sputum culture which revealed why I wasn’t getting better as the anti biotics I was on were not sensitive to the bugs I had grown. Thankfully from a respiratory point of view I am doing much better. My lung function has finally started improving just in time for clinic on Wednesday! It dipped a huge amount to almost half of what it normally is so I was quite concerned but I didn’t really tell many people and now I wish I had as I was stupid to try and combat this on my own and get on with daily life. I was pushing myself to take Ghillie out for a walk but then would end up on the sofa for the rest of the day. This is all getting much easier now which is good. Ghillie has been very protective of me too.
Last week I guess I just felt that everything got way too much for me. A letter from neuro ophthalmology came out the blue requesting I get various blood tests. I have not seen them in over a year so it was a surprise to get the letter what surprised me more was that the letter was first created 6 months ago and I only got it the other day. I also didnt understand most of what the letter said but speaking to a friend who knows about eyes it is to do with my optic nerves being swollen and abnormal in shape. I got the bloods done which were abnormal so now I am really concerned that I have been sitting with abnormal bloods for some time and something could have been done about it. The bloods that were requested were Vitamin B12, B1, B2, B6 and my folate. All of which are not correct and need correcting. So I have been started on folic acid and need to see the GP about correcting my B12 too. I am wondering if the fatigue I have had for so so long could be due to this but I have always put the fatigue down to my asthma. This has got me really worried and it has been another muck up with neuro ophthalmology as my initial appointment kept getting changed, this happened about 4 times and it took me writing to them for them to give me a new appointment and be seen. A couple of times the appointment was changed the day before I was due to attend and given that I was referred to them due to the ophthalmologist at the Eye hospital thinking I might have a brain tumour and had an urgent MRI. The appointment with neuro ophthalmology was to get these results. I now just wait to see what they say but I am not confident in them.
I have had quite a few bad falls to which resulted in a serious knee injury with torn ligaments. It turns out this injury is going to be positive as I have a great physio who has got me started on a rehab program using a Complex machine to stimulate my muscles and get them working better. The work with the physio has done way more for my leg and nerve damage than the 2 years of neuro physio has done. The fall knocked my confidence a lot but there has been some good out of it.
My allergy consultants also referred me to a dietician to speak about my diet from an allergy point of view. I have been following a salicylate free and salicylate low diet for well over a decade now. The consultants wanted me to have some input from dietetics just to make sure I was still on track and there was nothing glaringly obvious that I was eating or drinking which could be making my allergies worse. Well the appointment just led to confusion. I have spent a number of years being very diligent about my diet and make sure I know what it is I am eating. I have a pack of diet sheets I was given which is very detailed and tells me what is salicylate free, what has low levels and so on. So I had a consultation via video call with this dietician who to be honest really didnt understand my diet or the severity of the reactions I get. The sheet she has and which she sent me was so vague and really was not helpful. It didnt mention a lot of foods so for example I can eat potatoes (if I want but I actually hate them) but potato skin is high in salicylic acid which I told the dietician but her response was that it wasn’t on her sheet so I can eat them. I told her about how I react to chilli and have quite a bad reaction to it but was told that according to her sheet I should be fine but looking at her sheet it shows that it has a medium about of salicylic acid in it which for me is a no go. There are also other nuts and spices too and she said I should challenge myself to them because I should be able to eat them according to her sheets. I found this attitude really difficult and it was really a waste of an appointment because I am not going to follow the advice she gave me because I feel that the information I have is far more detailed and in-depth than what she had even if it did come from The UK Association of Dietetics. I feel really bad that I have wasted an appointment which someone else probably could have got some use out of but I really didnt know it would turn out as it was. She never even asked me about what information I use to determine what I eat or what I was told by dieticians in the past etc. It was I think a learning curve for me and I could have perhaps dealt with the appointment better but with so much going on just now and not feeling in tip top form I didnt have the energy to put more effort into it. I guess I have done what my consultants wanted me to do so hopefully when I next see them I can explain about what happened and what I do with my diet etc.
What really scared me and it takes a fair bit to unsettle me when it comes to my health even when my asthma is bad and I am facing the prospect of being admitted to intensive care happened at the weekend. The events have happened once before but not as bad as this. I was at my friends house after a nice walk with the dogs and got back to settle down to watch TV with some good nibbles and then have a roast chicken for dinner. I have no recollection of what actually happened but I suddenly went from being ok to being away with the fairies acting like I was really really drunk or on drugs (I was neither, I had had some cava but not enough to make me drunk). I was doing really random things, and coming out with the strangest statements, my words were all clear but the sentences were just so random. This has really shaken me as it is so out of the ordinary. The only other time this has ever happened was when I was in the car with my Mum and we were chatting and I came out with a really random statement mid conversation. I put it down to being tired nothing more but now that it has happened again I am quite worried. It might be hypoglycaemia as when I got home at the weekend I did check my blood sugar which was 4.0 which although not very low it was quite low considering I had had a fair amount to eat and it was a balanced meal as well so not like I had loads of sugar and was high and then crashed down low. (I have a blood glucose monitor due to steroids which I have not had to use in a long time as my blood sugars have been pretty stable following some adaptions to my diet. The only time I have needed insulin tends to be when I am in hospital and pretty unwell).
So with all of this happening I have just not been coping that well and finding things quite tough physically as well as mentally. I feel my confidence in managing my health has been knocked but part of me feels really silly for letting it knock me so much when I have been through worse. I wish there was a quick fix and it would all go away but there is nothing I can really put my finger on for making me feel so rubbish for so long. It is a constant state of exhaustion which no amount of sleep cures it. I am hoping that perhaps the exhaustion is all due to potentially the low B12 and things and perhaps this has been long standing and is not new but just has never been checked Im not sure.
I hope this post explains why I have been so absent for a while. It is not a sympathy post but an explanation. I try not to post negative things about my health and try to keep the blog informative but this is my reality that I am facing just now. I feel over whelmed by it all. Asthma and things to do with it I can handle but everything else I feel so lost. I almost want to sit down in a room with all my healthcare team from each speciality so everyone knows what is happening and there is a plan. It all feels so disjointed just now and Im not sure what I am meant to be doing. I guess the best way to describe it is floundering. I have my respiratory consultant on Wednesday so I hope I will have the chance to speak with him about things and maybe he can help me sort things out. Hopefully also with a bit of time things will settle and I can feel back to myself again.