• Sophie Ward

Food&Make A Mark With Kindness

So, finally - food. Not just one main meal but two. Wow.. Pushing the boat out. After giving me milk 🥛 last night and having an awful night of stomach cramps and feeling beyond sick it took until 11.30 ish to feel a little better again. I had to be assigned a one to one nurse and physicals taken every 20minutes because my temperature kept going up and down. My throat is awful- so sore. But there is not much I can do about that as they keep feeding me everything with oil in regardless. I was SO hungry it didn’t touch the sides. I didn’t like what I was eating, as we aren’t allowed sauces and only allowed ONE pepper sachet and ONE salt sachet to use per dish.. you can imagine. You expect in hospital if you need pain relief you would receive it and receive it rather quickly. Think again. Pain relief unless prescribed has to be signed off by a doctor and then you are allowed 2 tablets. Well when the doctor only comes in at 9am I waited until 11.15am to receive pain relief. After beginning with stomach cramps at 9pm the following evening. You come here believing you will receive better care than you can provide yourself at home but it seems you get the total opposite. My liver is killing, my burning and joint pain has heightened because I have now gone a week without my detox and Lyme med’s. And when I am being given things my body reacts to and doesn’t like my liver is struggling to flush them out - getting more backed up. Generally making me feel more sluggish. To make things worse on top of all this nobody speaks.. I am done with my meal 🥘 before everyone else ( too hungry ) then have to sit there for a further 30 minutes for the whole table to finish making rubbish conversations. You have nothing else to do, you can only look around for a few minutes. I am running out of subjects to spark conversation with. Christmas markets, Christmas buying, cars, travel, food favourites and family have all been covered with EVERY member of staff that now Sophie is struggling to think up of other conversation starters! You all know conversation zaps me. So having to do it 7 tines a day for 30-40minutes each time! Can you imagine!!! Then when I have visitors who I am grateful and blessed to have and make the time to come and see me I want to make the effort with them.. but by 8.30pm I am on the floor. Then because I am poorly I have to be woken up four times in the night for blood sugars and blood pressure. Then we are all woken up at 6am to begin the day again. We have had to pad out the bed with two duvets underneath me and my duvet folded over me because the beds are rock!!! I felt so ill this morning that after breakfast I just had to curl up in a ball on the sofa and hope for the pain to go away ( as pain med’s weren’t going to be given to me for hours) then of course they call you for bloods, you get up and you go dizzy and can’t see anything. So you walk around looking drunk. Now they have established my heart is luckily beating and keeping me alive I can go from having an ECG everyday to every other day. But I said how my bloods need to be monitored ( not that they will tell me ANYTHING ) they have agreed to keep my bloods daily. I need to ensue my white blood cell count stays in the normal range. Which after months I had just managed to do before admitting myself here. Just typical.. as without my strong vitamins from America keeping it strong and here my body being tested everyday I may as well had flu or an illness. I am feeling battered and in a far worse state than when I came in. I am hoping because I am pushing so hard to be out ASAP. No messing about - they have done enough damage I am feeling like a run over version of myself not a better version like I had hoped. I am luckily at a stage many take 4-8 weeks to get to ( told you no messing ). Because you are different the staff don’t listen to you as they don’t understand the results of your physicals or your symptoms because they aren’t textbook and what they are used to it’s easier to dismiss them. I can’t change or alter results though - the evidence is always in front of them. They at present are reading it but pushing it to one side. Why deal with someone complex ( out of the box ) when they can dismiss it- far easier. Their answer to everything is pain relief ( if the doctor has signed it off) or histamine. Just praying, praying things improve as right now I really don’t know how I much more I can take. I am sick of feeling this unwell and dealing with it on my own. Being ignored or made to look crazy. At night I just dread the following day questioning if I have the strength to get through it. Of course I always do. And when visitors come I try to be ‘normal’ Soph so they think I am coping reasonably well but being in a place where you are VERY much alone because you can’t make friends with people who don’t want to make friends and staff are just trying to get through their shifts with no major issues you are deflated and lost. Yet again left to battle the fights of symptoms flares alone. In Hemel it would NEVER be like this! If you needed pain relief you would have it within 10 minutes. If you were having a reaction treatment would be stopped and another approach would be taken. If you needed to be detoxed and the system recharged then you would get the infusions / or tablets for that. You could have ALL the pillows in the world if you needed them, extra mattresses. Vitamins and herbs to manage symptoms. The total opposite of here. Luckily my professor is far from happy with the way I am being treated here and will be speaking to staff directly tomorrow. Hopefully he can kick them into touch. If not then who knows what my options are then. I do not wish or have any desire to spend Christmas in hospital! And the clan know as soon as I discharge from here we are going to TGI Friday’s for cocktails and sweet potato fries. Oh how I can’t wait for that day! Back to my bed! Family and friends, home comforts, real food!!! That’s all I think about. Although I love messages from home I can’t even find the strength to reply to them at the end of the day. As my strength has been used up just GETTING through the day that any memories or reminds of home just cause me to get upset. It just breaks my heart. It’s the hardest. As staff keep telling me, take everyday as it comes. And that’s what I am trying to do. Boy am I well and truly zapped though. When does Sophie get a break? I thought coming in would be like a mini break of some sorts. NO. Totally wrong there. Each day only get harder and loneliness and symptoms heighten. My hope is slowly being zapped. I am as positive as I can be.. but this is REALLY testing me. What was beautiful today was our activities of writing something postitive about someone and passing around until everyone had done everyone in the group. 

I received some lovely kind comments and it just proves that if we can take anything from rough, lonely and damn right awful times that we should always practise kindness. There is so little of it in the world these days that if anything you will be remembered for it. 

S Xoxo 

#Lymedisease #Treatment #Stories #Health #Hospital #Journey #Stays

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