…all she wants is peace!

I’ve not been in the mood to write for the last few weeks. I’m still struggling with an ‘infection’ in my leg. I’ve taken a number of antibiotics (Flucloxicillan, Doxycycline and Metronidazole) all with limited effect. The doctor has now given me medicated bandages to see if this helps. So far, not feeling it; just feeling fed up with it all.  In addition to the leg problem, I started the Pregabalin but gave up after three. They made me hot, sweaty, breathless and fatigued. Wasn’t sure if related to leg, or not, but didn’t risk continuing. I’ve got the Lignocaine infusion booked for next week but again I’m anxious about going ahead because of the persisting leg infection. I feel I can only deal with one problem at a time just now.

On a more positive note, I had an assessment for a Blue Badge (disability parking ticket) earlier this week. I didn’t think it went well but I think that was because I judge myself quite harshly.  Anyway, I got an email saying I’ve been successful. Now I’ve got mixed feelings; one one hand I’m pleased ‘cos it will make things easier on my bad days, but it also reinforces my feelings of being old and decrepit. I know I’ve got to work harder at having a positive opinion of myself; after all I wouldn’t judge anyone else so harshly.

It certainly feeling very wintry now. It’s quite dark in the mornings and cold. I’m now having to put on the heating to take the chill off the rooms more and more often. I’m not very good come winter; I tend to hibernate. As soo as its dark and the curtains get drawn I have to fight against the urge to go to bed. Last night at 08:30 I had to really force myself to stay up I managed to fit his by making a lovely warming cup of hot chocolate. Only problem, when I eventually went to bed, around 10:00, I suffered horrendous restless leg syndrome; it finally subsided after I took an Ibuprofen and Zapain.

I’m writing this while I’m at work, not something I usually do but the system has crashed and I’m unable to log in to the system. Thought I’d put the time to good use. Tonight I’ve got to take wee Remi (one of our wee old twin cats) to the vet.


Poor old Remi

 She was recently diagnosed with hypothyroidism and has been on tablets but we’ve noticed recently her eating habits have ramped up again so we’re taking her to get her bloods checked. It’s a wee shame for her; she’s 15 years old and a wee bone, she doesn’t do very much except eat and sleep.  Her twin sister Mili seems much more robust in comparison.


Mili Minki

I’m feel nervous taking her to the vet as I know one day soon there will be nothing we can do to help her. In the meantime all we can do is make her comfortable, although every night we have to force feed her medication; it takes less than a minute but everyday I feel I’ve torturing her. Poor wee boney maroney all she wants is peace!!




Who would have thought macaroni cheese could be so lethal?

Woke up today in much the same mood as yesterday, feeling very tearful, and achy.  I made some really bad choices yesterday, which I paid heavily for last night; the   echoes of which are hanging around this morning.  Because I was feeling so low, the weather seems to have worsened and the temperature plummeting I was in need of something comforting to eat and decided (against my better judgement) to have some macaroni cheese.  Its been a long time since I’ve had this, especially made with real pasta and not spelt pasta.  I made a big casserole dish, planning to have as a side order with some salmon, somehow I omitted the salmon and ended up with a ginormous plateful of macaroni cheese on its own.  I admit whilst eating, it was delicious however, I quickly realised I’d made a mistake and spent the entire evening sipping hot water to help with the indigestion and bloating it gave me.  When will I learn??  When am I going to start taking better care of myself and stop giving in to flights of fancy, after all I always suffer more in the long run.   As I sit writing this having taken  Co-codamol to ease the pain and had a long chat/cry with my patient and put-upon husband, I am feeling a bit better.  I know I’ve got to stop all this mithering, take affirmative action (wow, that sounds powerful) and start living my life in the real world and not in my head.  To that extent I’ve decided to start the Pregabalin tablets I was given by the pain management team and re-visit LCHF (low carb high fat) as a lifestyle choice.  Last week I pondered whether or not to take the Pregabalin due to fears of gaining more weight, trouble coming off them and general anxiety concerning  worsening of my symptoms.  I realise I’m in limbo at present and by taking the medication I will find out 1) they don’t make any difference or 2) make me worse (in which case, I stop them) or they can 3) help make things better (a good thing).  I have also given myself an initial 6-12 month window for taking them.  I am hoping they will take the edge of my pain, helping me mobilise better and hopefully start doing things I enjoy, which in turn may help with my low mood.  Win/win.  I have also got a date for my Lignocaine infusion (27 September); once again I am mithering whether to go ahead with this or not, I’m quite nervous but also think I should give it a go.  What is the point of asking for help if you never actually take it?

I’m off now to do some planning and preparation there is a lot of stuff in the kitchen that is not LCHF which needs to be used up; the Scot in me won’t let me just throw out good food so I’ve got to become quite creative to use it up without compromising the principles of LCHF too much.  However, before that I’ve got to decide whether to eat the remaining macaroni cheese and suffer one last time or force feed my husband and he can suffer for me.  Who would have thought macaroni cheese could be so lethal.





…train my cat to make dinner!

I woke up this morning in tears…feeling very low and lonely.  I’m still trying to fight off this episode of cellulitis, nothing I do seems to be helping long-term.  I’m frustrated with my GP surgery, every doctor I see (when you can see them that is – last time it was a telephone triage appointment) seems to be unable to understand 2-3 separate problems can connect to make one big problem and the solution isn’t always the standard you would have for each initial problem.  They understand cellulitis, as a condition, but not in conjunction with lipoedema; in fact, I can’t even get them to acknowledge lipoedema, they always correct me with lymphoedema (‘cos I’m fat and have large legs) and if I repeat lipoedema, they give me that look as if I’m a simpleton. No GP has ever looked it up, or taken any interest in lipoedema.  After all, how could a lay-person who suffers from a condition, no more than a doctor who has studied general medicine for years.

All I can say is I’m totally, and utterly, disappointed and frustrated by most medical professionals (except specialist nurses; they are under-rated and under-valued).  I’m not sure if it is particular to Birmingham (‘cos this place is a shit-heap), or because the NHS is being squeezed into oblivion by the Tory government, but things have certainly changed.  There is no ‘care’ in healthcare these days.  If your condition doesn’t fall into a neat little box you’ve got no hope.  All they want to do is foist their drugs, lotions or potions on you; as long as we keep profiting  the pharmaceutical companies (and their shareholders) it seems people’s lives, health and, in particular, their mental health do not matter.  I suppose this is why the internet to some extent is a life-saver.  Although it is difficult wading through the diatribe, eventually you come across some good advice, humour, support etc.  The difficulty is everyone has an idea and when you want a quick solution it can be very frustrating.

Over the past few years (prior to diagnosis) I invested in solutions to my problems by buying stuff (chi-machine, rebounder, vibration plate) or consuming strange concoctions (apple cider vinegar, gelatine, bullet-proof coffee).  All of which I am unable to determine has helped or hindered my progress, I have always been looking for a quick fix (2-3 weeks) to see or feel an overall improvement, if nothing definitive I’d go back to the drawing board (internet) and start again.  This is why I’m frustrated with healthcare provision at present, it places the onus on the patient to investigate their condition and to find solutions unless of course you are willing to take prescribed medication.  The problem I have with just taking medication, is it deals with the symptoms, but fails to acknowledge the underlying  cause.  The way the NHS is being run, because it is so tight on time, prioritises medication over any other solution and this working model is repeated over and over, so if you have a reaction to one medication they often prescribe another to deal with that symptom and if the same thing happens another medication, and another – ad infinitum.  We are encouraged to be drug addicts, but not happy-clappy drug addicts, ‘cos the pharmaceutical companies, its shareholders and the government don’t want you to feel happy in a natural way ‘cos they can’t make money off.  They want you feeding off their drugs, keeping you in just the right amount of pain and misery, so as to be able to offer you more – all the while slowly destroying your internal organs.

All I want is a meaningful discussion, not limited to ten minutes, to discuss my concerns, my fears and possible solutions – I want a more holistic approach to my  healthcare, but I’m afraid I think it more likely I can train my cat to make dinner!