…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.

IMG_0034.JPG

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.

IMG_0058

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!

I am just well-upholstered…

My euphoria, sans Pain Management appointment, was short-lived.  I’ve had a sore leg for a few days/weeks (I’d scratched it on the shower screen a few weeks ago) which hasn’t got any better.  I suspect cellulitis, as well as a particularly annoying varicose vein, so I attended the walk-in centre at the hospital after work.  The lady I saw was again, very good; she was patient and took time with me.  She checked my heart beat, lungs etc.  but when it came to the blood pressure my heart sank, I always have problems getting my blood pressure checked because of the lipoedema in my arms.  It is excruciatingly painful.  Despite my best efforts to pronounce lipoedema, (I think most health care professionals only hear lymphoedema), and explain I am better with a wrist monitor, she proceeded to use a small cuff on my forearm.  I thought, maybe it wouldn’t be as bad here as in my upper arm, WRONG, it was excruciating, I’m sure she looked at me like I was over-reacting, or over-acting.  I let her continue despite the pain until a reading was reached; 160/105mmHg.  Too high, she said.  (That’s because I was being tortured, anyone’s blood pressure is bound to rise under those conditions).  I checked later on and there is a distinct bruise, on my arm, where this torture had occurred.  I’m not really complaining, I think overall she did a splendid job, in comparison to other healthcare professionals I’ve come across.  Lo and behold, my own diagnosis was right, I have got cellulitis and she has given me antibiotics (Flucloxicillin) for a week, she also said I should go to my GP about my varicose veins.  

This goes some way to explaining why I’ve been feeling generally quite low and run-down, I thought is was mainly due to having a busy week and not being able to rest as much as I’d like.   Hopefully, the antibiotics will kick in quickly and I’ll start to feel better, I’ve booked next week off work and although I’m hoping to rest and recuperate a little,  I am also hoping to get a few things done around the house.  I need to feel a bit more on top of my game for that as housework is already a struggle when you are living with lipoedema, fibromyalgia and are a buxom beauty (trying out positive affirmation to help my mood).

P.S. – I just looked up buxom out of interest in the dictionary/thesaurus and was quite tickled by the synonym “well-upholstered”, I may just use this expression in future in place of fat, which has become such a derogatory term.  From this day forward, I shall proclaim loudly, “I am not fat… I am just well-upholstered”.

 

 

 

 

 

 

 

 

 

Relaxing, pain-free, drug-fuelled future.

I had a consultation with Pain Management at the local hospital today, overall, I’d say it went well.  The specialist nurse practitioner was excellent.  It was so good speaking to someone who understands.  This is the first time since diagnosis I have been able to talk to someone about my aches, pains, anxiety, depression and everything related to how I feel.  I admit I was very nervous beforehand, mainly because of previous experiences with healthcare providers which have not gone well.  Today my faith in the NHS was restored somewhat by this nurse specialist.  Unlike in other consultations she took time to listen and explain about the condition, took a detailed history and was able to discuss different treatment options, which surprisingly included acupuncture.  She also provided me with a tool-kit which offered hints and skills to help manage pain and details of a support programme they offer to connect with others in the same position.  The consultant consultation was not quite so positive, although I think I was feeling quite tired and emotionally drained by then, so this may not be a clear reflection of events.  Both chaps I met were very nice, but it felt a bit more like the business end of the experience, less chat and more about what they could offer.  I came away with a prescription for Pregabalin 25mg bd, I’ve been consented for a Lignocain infusion and some acupuncture sessions.  I admit that I came out feeling positive but also a bit concerned that the treatment revolved around  medication; I’m feeling generally conflicted about the use of medications to treat symptoms rather than trying to find a cause and then treat this.  I’m also aware that sometimes it may be worth putting your principle’s aside, even temporarily, in order to see the big picture.  Having struggled for sometime now with very little relief I’m wondering if reducing the pain and easing my anxiety may be more useful in the long run.  Whatever I decide I know the decision does not have to made today, I’ve got time to do some research.  I have some concerns regarding the drugs, I do not want something which causes too much weight gain; I’m already fat enough and struggling to walk adding more weight can only make things more difficult physically and mentally.  In addition, I don’t want anything that is too addictive, I want to know I can come off them without too much difficulty.  My main concern however, is I want to know they work, some minor side effects may be worth putting up with if the damn things work.

Anyone out in blog-land who happens to read this and has some experience of Pregabalin, Lignocain infusions or acupuncture I would really welcome your advices or feedback.

Unfortunately, I’m now feeling quite drained after such an eventful day so I’m off for an early night and dream about my relaxing, pain-free drug-fuelled future.

 

Five more minutes is all I need…

How do I stop the screaming in my head.  For the last 20 minutes its been constant.  I despair sometimes, wondering if I’ll ever be alright again.  I don’t mean physically, I’ve accepted that’s never going to happen (although accepted is far fetched, grudging acceptance may be closer to the mark).  Mentally I feel worse than I do physically, especially today.  The day started much like any other; got up, showered, dried my hair, had breakfast etc. I was not working today as I’d booked the day off to be with my husband, at his suggestion.  We’ve spent a lot of time recently de-cluttering, what a fucking thankless task that is.  Feels more like swirling around in all of your belongings, being reminded of the hopes and dreams you once had, only to find them boxed up at the back of the cupboard with the rest of your sad little life.  It’s cold again today and I’ve spent the last hour in bed, out of boredom rather than any other reason.   Everything aches, I’ve eaten badly again today.   I cannot seem to take care of myself, I get angry with myself for not taking care of myself, for not nurturing myself, for not being kind to myself and then I blame those around for not taking care of me either.  I feel in a chicken and egg situation; what came first my mental anguish or my physical breakdown; which one do I attend to first.  As I sit writing this my husband is in the background, his mere presence is getting on my nerves, his breathing, his sighing, his inability to fucking understand what is going on with me!!!  Yet it’s not his fault.  All I can do is fight down the urge to lash out at him, so I ignore him and his breathing and sighing becomes louder and louder.  FFS, he’s spent the last few hours in his ‘man-cave’ ignoring me, how can it be that as soon as I get up and move around he’s there asking, pleading “what’s wrong?”, “are you O.K?”.  I swear if he asks what’s for dinner I might throw this ruddy computer at him.  I am hoping writing this will help release frustration, will settle me down so I can pretend once again everything is OK.  I can feel it dissipate a little, I no longer want to kill the man sitting on the sofa behind me.  Although I swear if he speaks I may punch his face in.  Five more minutes and I’ll be alright.  The darkness will have passed and I’ll be back in the the dreary grey area of my life, which is manageable.  Five more minutes is all I need…

Good old British summertime…

It’s Friday evening, time to breathe a huge sigh of relief at having gotten through another week.  I can’t believe I’ve had to put the heating on ‘cos its so cold and damp; its ruddy August – British Summertime!! What a joke.  I can’t believe a couple of months ago I was complaining ‘cos we had a three day heatwave now it feels like winter has come early.  I only hope we have an Indian summer, I’ve yet to be able to sit in the garden, or fire up the barbecue.

On a positive note, I’m feeling relatively upbeat having checked out some blogs relating to fibromyalgia.  I no longer feel laden down believing I’m some sort of fraud, neither am I convinced I will never have another dark day.  Its been nice to hear other people put into words how I feel physically and mentally.  Just knowing I’m not alone has perked me up even though as I sit writing this my back, shoulders and legs ache, I’m yawning so widely I feel I could swallow my own head and I feel so exhausted I could sleep for a week.   I’m fighting the urge against going to bed because I’m hoping when I eventually get there I will be able to have a good, deep sleep and feel refreshed in the morning.  I say hoping ‘cos I don’t know how long its been since I had a good, deep and refreshing sleep.  I’m not complaining too much just now ‘cos compared to a few months ago at least I’m getting better sleep.  Two things make sleeping difficult; 1) I need to pee at least 2-3 times a night, doesn’t seem to matter how much or little I drink I still need to get up and pee.  2) I can never find a comfy position for too long.  I am constantly changing position and the number of pillows and cushions I use to help me.  Sometimes, its better if I sleep in an almost sitting position but then my back or legs begin to ache, sometimes I’m lying down and my shoulders and arms begin to ache.  Often I sleep on my side with a pillow between my legs (did I mention I’ve had severe coccyx pain for years) and cuddling another pillow.  Each position offers its comfort, but not for long.  I can usually tell if I’m going to have a bad night and I end up taking a pain killer (Co-codamol) before going to bed, I think it has become a habit and I’m not sure if I get any real benefit from it anymore, other than it helping me to relax.  Some nights I fight the urge to pop the pain meds and end up waking in the night in more pain than usual.  Catch 22.

Tonight I know I’m going to suffer, we’ve decided to have a little treat, Indian takeaway for dinner; my favourite, chicken tikka masala.  The main problem being its so delicious, I never know when to stop eating; especially fresh naan bread.  The main problem some foods are so delicious its hard to give them up.  Anyway, decision has been made and now I just have to live with the consequences – hopefully they won’t be too bad!