Beaten down bloody broken bloated, but not dead yet

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maryjaneholland

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At breaking point with NHS "healthcare" bods having meetings about me without my involvement, many pressing personal problems pushing me backwards into old behaviours of comfort eating, fallen off wagon on "weight management, diabetes management" front, have tried to talk to friends and family but it's just usual total lack of support/empathy/concern/sympathy/understanding, and instead dismissive blunt questions like "why do you need to access healthcare? why are you making complaints about NHS? why is it so important to be referred to consultant? why don't you just lose weight with diet and exercise it's so easy?" from someone who has been given huge amounts of prescription meds and weekly GP appointments with no problems, so I guess being straight married with kids really does get you credit in the straight world after all, ugh...

Not coping with all diabetes meds side effects yo-yo-ing from starving to binging to hating my bloated body and wishing I was made of stone, nobody understands how much time effort strength energy and focus it takes every day to just barely survive and stay alive, not getting any help from anyone and the "professional consultation" meeting tomorrow will take everything I have to overcome and ignore as my GP and Consultant discuss what's best for me - entirely without my involvement as though I'm stupid child who must obey the responsible adults, and feeling extremely degraded by whole process and yes I have submitted my first requests to lodge complaint and request an independent NHS complaints advocate and researched community care solicitors in my area as this feels like civil war!

General stress levels very high and keep imagining every time diabetes meds turns my insides out like organ grinder that I must have numerous cancers and other illnesses and keep finding blood in the toilet after all painful indigestion bloating and OTT bowel movements making me housebound on worst days - I am available for modelling and advertising Metformin in all mediums and being professional spokesmodel paid to talk about poop and the lack of access to public toilets in the UK, for any Pharmaceutical Reps reading this, slide into my DM's...😉

Promise not to keep my "poop party" posting reputation going, so will end it there for now, surely there must be some bad taste positive body image reclaim the power "don't let the b*stards grind you down" parodies and satire out there, anything to cheer me up that involves creatively and artistically flicking the V's at the diet industry, the fat-shaming bullies and everyone who ever said dismissively it's "so simple so easy" to lose excess weight like 100 kilograms, Ghurl they know nothing!
 
Sorry to read you are having such a tough time, and struggling to find the support and empathy you need. :(
 
@everydayupsanddowns @Vonny thanks for your support and kind words really appreciated, and I feel I owe the forum some positivity and coping strategies from lived experiences to be deployed like "get out jail free cards" at your own discretion when you end up stuck in rut as I have described here above...

Today as usual, my dealings with NHS remain adversarial and the Reception staff at my GP Surgery refused to provide me with HBA1C blood test results I had taken before Easter Bank Holiday Weekend at my Diabetes Nurse health check appointment, and told me there were no appointments on the system, when queried I was told my blood test results were all "normal" so wow I'm cured of diabetes, but this careless treatment has happened before and instead in reality it's very much "you need to discuss your full blood test results with GP, that's not the job of Reception, and you need to book online, but website forms are closed now until tomorrow, and we're closing now so...", and I interjected with appointment date "25th April! I booked GP appointment in March for 25th April!" and reply "Oh yes I can see it now, yes you are booked in with GP on 25th April bye now!"

Think most average people would struggle with navigating NHS as it currently is, so my new approach is to limit my contact and time with dysfunctional organisations and broken burntout staff, I have setup an online pharmacy account so my prescription requests are now online form on GP Surgery website passed to GP for signature, then to online pharmacy (I use Lloyds Direct/Pharmacy2U), then passed to Royal Mail for home delivery, and I have removed my email address from the GP database, so I only have irritating texts to manage and can't hit "reply" to vent my anger, so what happens instead?!

I am learning to funnel all my frustration, anger and negative feelings into exercise which saved me as teenager, and it's much healthier than directing angst at NHS staff, or exploding in rage in public, or venting my spleen online, so there will be probably be fewer shorter posts from me until I reach my goal of weight loss and remission...

I realised it is within my power to make lifestyle changes and I have been exercising and making music playlists to motivate me and thanks to forum members realised that you can make this process fun if you approach it differently, so changing the NHS is an impossible soul destroying nightmare, but going for long walk after train journey to National Trust property and listening to motivational music playlist wearing right shoes and exercise clothing is very much task I can complete fully and feel I have accomplished something, and there's always boxing punchbag if I have particularly bad experience from say NHS staff enquiring about my genitals with smirk on their face, just smack the bobo doll punchbag until I'm exhausted ha!

Will post Spotify/Youtube links, and think the forum could really do with "culture" section for music fans and movie nerds and book readers as this immersion in cultural pursuits can really help to distract from bad side effects, bad health days, being housebound or just engaging with others, as positive coping strategies!

Think this works as browser link or download app on to your device, sign-in to Spotify free membership with adverts, you're welcome, free exercise music! 😎





 
You might find the NHS App helpful for getting your results direct?

That’s what I use now rather than having to run Receptionist Roulette.
 
@everydayupsanddowns thanks for tips, need to apply for adult passport anyway, but NHS don't make it easy to register for their app, and tried again to follow the NHS process today, submitted online form via online GP surgery, no response, so called around 5pm to be told by Head Matron Jobsworth (who played the lead in "Carry On Matron" over sixty years ago!"), "No, you'll just have to wait until your next GP appointment, we are very busy" end of call, and had bad day trying to nurse severe migraine headache which doesn't respond in slightest to standard painkillers, but don't want to be dependent upon habit-forming strong pain meds on prescription either, and have to get better and be "functional" for weekend commitments with booked tickets and people depending upon me to be punctual and reliable, this will teach me to make plans in advance with medical conditions limiting my life, ugh! 😱
 
maryjaneholland said:
@everydayupsanddowns thanks for tips, need to apply for adult passport anyway, but NHS don't make it easy to register for their app, and tried again to follow the NHS process today, submitted online form via online GP surgery, no response, so called around 5pm to be told by Head Matron Jobsworth (who played the lead in "Carry On Matron" over sixty years ago!"), "No, you'll just have to wait until your next GP appointment, we are very busy" end of call, and had bad day trying to nurse severe migraine headache which doesn't respond in slightest to standard painkillers, but don't want to be dependent upon habit-forming strong pain meds on prescription either, and have to get better and be "functional" for weekend commitments with booked tickets and people depending upon me to be punctual and reliable, this will teach me to make plans in advance with medical conditions limiting my life, ugh! 😱
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There are some preventative, prophylactic migraine medications which can be effective for some people who get a substantial number of migraines or some which can be taken if you get a warning of an attack and are taken soon enough. My daughter found those very effective but she also found chiropractic treatment on her neck helpful.
 
@everydayupsanddowns @Leadinglights thanks for your tips and feedback, the "Reception Roulette" is really played out, so just have to wait until 25th April to get HBA1C test results, whilst formulating every possible option for limiting contact with completely broken NHS as the stress does me no good, I will get my adult passport, I will get access to the NHS App and continue to convert the function of NHS staff into digital medium to reduce my reliance upon them and minimise all the healthcare inequalities, this process of being refused test results by admin staff will never be happening again!

Migraines are tightrope walk, staying hydrated, limiting screen time, getting enough sleep, having healthier diet avoiding all cocoa products, having strong painkillers in my First Aid Kit when they are required, reducing stress is the hardest one to manage as it's variable which can't be controlled or fully managed, but I am going on my trip to Leeds and feeling more secure about my capabilities today, so thanks again!
 
Wow, so quick update, despite my best efforts, my HBA1C blood glucose average levels are somehow back to 90, and BG levels were highest when I was first diagnosed in September 2023 around 95 after many years of living with untreated undiagnosed Type 2 Diabetes, are my Metformin tablets placebo sugar pills?!

Quick recap on my own progress anyway, taking 2000mg of Metformin every single day, not missed any doses and have stack of meds at home, still trying to get Mounjaro (Trizapetide) on NHS prescription via unhelpful GP Surgery saying "NO" to every request made and not seeing genital-obsessed Diabetic Nurses, starting PARS exercise classes weekly, starting NHS Remission Programme in May, new haul of exercise clothes and hiking/rambling/outdoors walking stick, only drinking filtered water or herbal tea or unsweetened almond milk, not committing to volunteering where I am sedentary or stationary any longer, and trying hard to overhaul my diet so it is low sugars, low carbs, low calories, healthy, tasty, varied and vegan, as otherwise stumped about how my progress has been reverted and gone backwards! Ugh! :confused:
 
Don't expect any responses, but really open to any feedback or responses due to usual patient-blaming, disability-shaming, zero support from my circle of friends and family none of whom live with diabetes, fatty liver, fatty pancreas, damaged kidneys, high blood pressure, tachycardia, sleep apnoea, insomnia, obesity, sugar addiction, and many other medical conditions, I easily fit the legal definition of disability under the Equality Act 2010, so all the ableists can bite me!

I have booked yet another appointment with the quote "diabetes specialist" at my GP Surgery, all previous appointments have been flash-in-the-pan speedtalking patronising punching down blame-fest of excuses mixed with lies over and disconnected in under two minutes flat, where nothing I say is listened to and there's bizarre fixation with the kidney-damaging gangrene-causing diabetes drug Empagflozin I sent back to online pharmacists, as drinking two-three litres of water every day would make me housebound, same GP stated I should "double the dose" of Empagflozin when I had to wait five weeks to find out my BG levels were around 90, and since then I have conducted my own research about Mounjaro (Tirzepatide) with high street/local/online pharmacists after the same GP stated "global shortages, not available, no NHS prescription, nope", and one local pharmacy offered to fulfil prescriptions for Mounjaro, Trulicity and Ozempic, all at lower doses due to manufacturers supply problems.

So the average cost for Mounjaro on private prescription is roughly £220 per month for 2.5mg and 5mg doses (£2640 per year) from Boots Pharmacists, and although I want to fact-check the GP's comments, my friends and family have said instead I will be quote "treated as nuisance telling the GP's how to do their jobs and they will remove me from the register if I disclose my intention to try Mounjaro on trial basis for one month and critique their decisions in any way", so I have the real life information from all the Pharmacists in my area, I just can't get my GP to write NHS prescription, and very unsure how to proceed, as having no GP is backwards step, but only taking Metformin and muddling through with DIY lifestyle changes as again nobody in the NHS has any time or effort to talk to me for more than two minutes at push is very unhealthy limbo where my BG levels will remain very high...

The only options I am aware of are seeking second opinion from another GP in the likelihood the usual GP will just repeat the usual lies, excuses, falsehoods and end the appointment offering very high dose of Empagflozin take it or leave patient skum, or raising my concerns and complaints with Practice Manager, who when I did this before about total lack of health screening tried to remove me from the GP register using an "acceptable behaviour contract" and tutting repeatedly about "so many emails" but gave no examples of anything quote "offensive" I had said or done or written, just more attacks on vulnerable disabled people, but this one has sting in the tail and well-honed "bullsh*t detector" ha!

I am left feeling very frustrated and letdown by my GP Surgery, but can push my feelings to one side and prepare my self for stressful two minute telephone appointment, yet I no longer have the luxury of just waiting around and continually asking same questions as I may have been living with Type 2 Diabetes untreated and undiagnosed for the last five years or so, having been diagnosed around September 2023, which pushes me to the one month trial of Mounjaro (Tirzepatide) paying for private prescription my self to gather further evidence of managing my diabetes better with semaglutide drugs, whichever brand is available on NHS prescription considering all the risks of high blood sugar levels! I am not out of the woods, and yes I am doing more exercise to lose weight (signed up to another class this week), and gradually reducing the loose sugars and carbs in my diet, but still having wholefoods versions of bread, pasta, oatmeal, in smaller portions as I don't have access to dieticians or nutritionists, just Nurse Ratchet with her broken busted antique weighing scales and penis-obsessed blunt questions like she's getting paid to push Viagra (yes I am male-bodied like drag queen or cross-dresser or trans woman, shock!)... Oh well, not dead yet! :(

 
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Have you considered trying the 'Flozins on offer? Some find them to be very effective.

It is probably easier to move on, having tried than want a particular drug, without following the standard NHS treatment map.

Just a thought.
 
@AndBreathe thanks for your response, can you confirm how you have dealt with the requirement to drink at least two litres of water (full size large soft drinks bottle) on top of what you already drink per day? How exactly does this fit in with busy daily routine in society where there's no designated public toilets? That's roughly three litres of liquids per day for me, using public transport with no toilets, urban areas with no public toilets, only retail stores with customer toilets upon request which may or may not be available, how does this work exactly without being housebound, or wetting yourself in public?

I highlight again my GP has not mentioned any side effects and instead has spoken about it like Big Pharma Sales Pitch quote "It can push twenty teaspoons of sugar out of your kidneys at the higher dose, this will help with weight loss, and managing diabetes too!"

Empagliflozin side effects again as most details missing from poor quality NHS website: https://en.m.wikipedia.org/wiki/Empagliflozin
 
maryjaneholland said:
@AndBreathe thanks for your response, can you confirm how you have dealt with the requirement to drink at least two litres of water (full size large soft drinks bottle) on top of what you already drink per day? How exactly does this fit in with busy daily routine in society where there's no designated public toilets? That's roughly three litres of liquids per day for me, using public transport with no toilets, urban areas with no public toilets, only retail stores with customer toilets upon request which may or may not be available, how does this work exactly without being housebound, or wetting yourself in public?

I highlight again my GP has not mentioned any side effects and instead has spoken about it like Big Pharma Sales Pitch quote "It can push twenty teaspoons of sugar out of your kidneys at the higher dose, this will help with weight loss, and managing diabetes too!"

Empagliflozin side effects again as most details missing from poor quality NHS website: https://en.m.wikipedia.org/wiki/Empagliflozin
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I'm fortunate never to have taken any medication to help manage my diabetes.

My suggestion was only that; a suggestion. Some folks have managed to accommodate the medication very well, but of course, one size does not fit all.

There are over 400 combinations of drugs available to help treat T2 diabetes - excluding insulin, so hopefully you and your GP will find a middle ground you both find acceptable.
 
@AndBreathe thanks your suggestion has been helpful in terms of negotiating and discussing and finding compromise with GP as there's no point prescribing meds to patients with very high expectations of water loading and increasing doses which will inevitably cause the patient to become housebound, so longer term solution is prescribing meds which can be taken as part of an active daily routine, and I will report back on Thursday, and I'm making my own enquiries about the quote "NHS prescription ban on all semaglutide drugs" as I can't find this written policy anywhere and I have clearly as described had my trust and belief in NHS staff and GP's thoroughly shattered in the last few years, so it's back to the NHS Integrated Care Boards who are permanently out of the office and take their time to respond to any queries ha! 🙄
 
maryjaneholland said:
@AndBreathe thanks your suggestion has been helpful in terms of negotiating and discussing and finding compromise with GP as there's no point prescribing meds to patients with very high expectations of water loading and increasing doses which will inevitably cause the patient to become housebound, so longer term solution is prescribing meds which can be taken as part of an active daily routine, and I will report back on Thursday, and I'm making my own enquiries about the quote "NHS prescription ban on all semaglutide drugs" as I can't find this written policy anywhere and I have clearly as described had my trust and belief in NHS staff and GP's thoroughly shattered in the last few years, so it's back to the NHS Integrated Care Boards who are permanently out of the office and take their time to respond to any queries ha! 🙄
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Have you considered calling the Diabetes UK Helpline and asking for their steer on availability? I would like to think as a diabetes specific charity, they would be very up to date.

When I looked on the website, this was the newest article I could fine: https://www.diabetes.org.uk/about-u...ly-issues-drugs-people-living-type-2-diabetes
 
Thanks yes there are some DUK helpline advisers who can offer useful feedback, signposting and time to listen to diabetes-related struggles, but there are also some who just want to get you off the phone, don't listen at all, and tell you that they can't offer medical advice and you should speak to your GP instead, and it's completely random from day to day how calls are handled, so I have learned to be very independent and detached as I have lived with many other medical conditions for lifetime.

There's some further updates from the Pharmaceutical companies regarding manufacturing and supply issues which always seem to be resolved in "few months time in the near future" but I have fully registered for the NHS Remission Weight Loss Programme aiming to lose 10 Kg over twelve weeks and it's probably best to start new drugs I have never tried after this, for example, Ozempic has reportedly caused digestion problems and stomach paralysis, alongside the loud warning about high risks of thyroid cancer on every part of website, Mounjaro has higher ratio of potential weight loss but is nearly twice the price of the other semaglutides, so next step in reality is waiting to be allocated my coach in June and ordering all the wondrous low calorie soups, shakes, meal replacement powders, LED spotlights to document my journey like social media influencer for that little extra bit of attention, and raising awareness of Type 2 Diabetes ha! 😉

 
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