Pulmonary embolism and pain management

 I have an awful lot going on with my health at the moment what with the lung 🫁 problems and my ongoing other health issues. My Multiple Sclerosis has decided that it wants to make life more difficult and my reflux problems are acute at the moment. I can only seem to be able to sleep sitting in my wheelchair 🦼 . Not as uncomfortable as that might actually sound. I am awaiting an appointment for an endoscopy but as with anything hospital related getting this done has become a comedy 🎭 of errors. The original request was made on the 30th of June but that evidently got lost but re emerged Friday last. The fact it was an urgent request is not on the radar of said appointment givers and despite two other urgent requests since I am still not any closer to getting my endoscopy 😮 

I’m not moaning but I am frustrated. Heather has the full weight of all these phone calls etc full upon her shoulders and it is gradually getting her down ☹️😔😞😒😩

Update I have got an appointment next Friday! Yippee. Wish me well 👍❤️

Pulmonary embolism makes me feel awful

 The last couple of days have been awful. I am as weak as a lamb and sleeping all the time in fact I may sleep at the end of this word! Sleep 💤 🛌 😴 

No photography today. Must do better tomorrow

 My camera 📷 lay unloved in the cupboard today ☹️ I try and use it almost every day but today was my first full day home from hospital and I was weary. My visit had been very eventful for all the wrong reasons. I discovered I had a Pulmonary embolism a cyst and I even developed Pneumonia in there. Thank goodness I was in there! Photography to me is a very special therapy. It allows me to escape away from the trials and tribulations of everyday life, it’s pure escapism. I love slowing down and waiting whether it’s trying to get a photo of a bird out of the window, I have a wheelchair and there’s steps down to our garden so window photography it’s then for me. Heather gets me photos of the flowers she grows form. I play around with them, I just crop or convert to black and white. I don’t like photoshop as in my mind it’s messing up the photo.

Sorry not been posting Multiple Sclerosis and life got in the way.

My last post was pre COVID-19 so it is ages ago but with all of the lockdowns and waves etc it seems an eternity since I last posted. Much has happened, I have finally got my Stoma done it’s a Colostomy and has transformed our lives. I’m no longer sitting on the commode for four or five hour’s everyday. Son in that respect life is better. Because of Heather changing the Stoma bags the bed needs to be moved which involves relocating the ceiling hoist and that’s due to happen next week 👍 . My other major news is that I now have an intrathecal baclofen pump. I had it inserted last February prior to the first lockdown . To find out about Baclofen Pump click here 

This pump is a brilliant piece of kit. Inserting medication direct into the spinal cord via a catheter from the pump inserted in the front of my stomach. 

 So lots going on but I haven’t wanted to share this with the 🌍. Now I have shared it so maybe more posts to come.

April’s arrived and flowers are blooming

 Yep the year marches on, we have got our second Covid jab booed for the 14th. And Easter looks like a cold flop. The weather is set to cold with even colder weather to come. The great news is we have loads of flowers showing themselves. Daffodils 🌼 of course but Heather took some photos of what look like fritillary and maybe some irises so stay tuned over the next week or so because as soon as the bloom they will be photographed by Heather. I can’t get into the garden as we have steps down the back of the house into the garden 🪴 and as of yet my electric wheelchair has not learned the art of getting me up or down stairs. We have a through floor lift to get me upstairs and I have to be hoisted in and out of bed. My multiple Sclerosis has left me unable to stand or walk. Still it’s one way of not doing the washing up 😂😂😂 

I have been on eBay and also on https://www.suttons.co.uk/ for the last week or so looking at plants 🪴 Heather is th gardener, I think on a previous post about Geraniums I described her as the brawn and me as the brains of our gardening efforts! Click here to read http://reflectingandmusing.blogspot.com/2020/06/wheelchair-gardening.html 

My enthusiasm is peaking to early this year, I have decided to hang fire for a few weeks and buy some garden ready specimens when the chance of frost has past. Plus we are waiting on 200 bulbs Heather planted to put in an appearance before anything else goes in the ground. Research 🧐 is key to gardening 🧑‍🌾 had I just gone ahead and bought one thing I liked the look of I would have been waiting until next year for it to 🌺 flower 🌸 . Right I am in bed writing this and it’s 11:59 pm so good night and and good morning all at the same time, I am signing off for now , here are some pictures of the garden.

Another day in bed, thanks MS

 I thought about getting up this morning but staying in bed was a far better idea. I was exhausted after a busy day yesterday, when I did wake up first thing this morning I did so with much reluctance, Heather made me my porridge 🥣 which I ate in bed, drunk a cup of tea took my tablets and went back to sleep 🛌 💤 l finally did get up at 3:30 . Multiple Sclerosis makes me tired beyond tired. It is referred to a fatigue because we all know about feeling tired, you know what it’s like after a busy day you want to kick your shoes 👞 off put your slippers 🥿 on and sit if front of the television 📺 and slob out. With MS you got to bed full clothed and you don’t take your shoes 👠 off. Heather woke me this morning and I was still knackered. I went back to sleep immediately and only surfaced to take on water.

Multiple Sclerosis make a mess of people and my variant is called Primary Progressive and where many people describe MS as “oh you have good days and bad days”  well with primary progressive MS the disease gets progressively worse!  More information click here on the link https://www.mssociety.org.uk/

Had day in bed with my Multiple Sclerosis

 I was awake at six and knew today wasn’t going to work. I went back to sleep, Heather made a cuppa and I had breakfast (porridge sqwiushed banana and honey) and went back to sleep 🛌  💤 😴  until after two o’clock when I woke up in a panic. My indigestion and acid reflux does that I feel like I can’t breathe 🧘‍♀️ and wake up in a real state. https://www.nhs.uk/conditions/heartburn-and-acid-reflux/

https://www.royalberkshire.nhs.uk/patient-information-leaflets/GI%20Physiology%20Gastro%20Oesophageal%20Reflux%20Disease%20GORD.htm

Feeling depressed

 I have been a bit low for the last few days and then it dawned on us why. Last Friday we had to visit University College London Hospital to have the Baclofen pump refilled and the dose increased so maybe it’s my body getting used to the larger dose of Baclofen. Drugs have had some strange side effects over the years from hallucinations to insomnia so it’s no real surprise. I have Multiple Sclerosis and recently had an operation to form a stoma a colostomy. So far it has been a success we are just two months in and the nurse has told us to wait three months before getting too excited. 

My depression maybe the drug increase or just dealing with my MS. I cannot walk or even stand anymore so all the pressure goes on to my wife Heather. She is fantastic and deserves far better from life but carries on regardless dealing with everything and putting my well-being before her own. Depression just creeps up on you sneaking in through the cracks and going unnoticed until it has suddenly got it’s feet under the table and is wearing it’s slippers, relaxing and comfortable with it’s surrounding. Currently with COVID-19 restrictions life is super difficult plus it is winter and even if I could get out it’s always bloody raining.

Heather has her work cut out getting me dressed and out of bed. I have to be hoisted on a sling suspended from an electric ceiling hoist. Showers and bathroom visits are done on a commode shower chair which has a mind of its own as to the direction it will take, I am sure it is related to the the wonky supermarket trolleys 🛒 that are abandoned in car parks. I am in an electric wheelchair for getting around but at the moment the furthest I go is downstairs in my through floor lift to sit looking out of the window for birds visiting the garden.  We have several bird feeders an even on a dull damp day like today the birds keep me amused and I am never far from my camera 📷 . Photography gives me immense pleasure and is something I would recommend to anyone feeling depressed! Digital photography has made everyone a photographer. Phones have fantastic cameras and for anyone who wants to be a bit more serious about taking pictures the range of cameras available is enormous. I will blog more about cameras another day.

Today’s post is about depression and I imagine that we all have off days, feeling a bit blue and cheesed off with the world. It was because of feeling like that on a long term basis that I sought help. My first port of call was my doctor (GP) and she had a nice chat with me before she told me that I was depressed!  It wasn’t much of a surprise I had known for a while that I wasn’t feeling ‘right’. She prescribed an antidepressant tablets and guess what? They actually work. After a couple of months of feeling better I stopped taking them, have another guess as to what happened, yep I started feeling depressed again. I have decided that they are alright and now recon they are the best two tablets I take each day.

I have no simple answers to depression I just know how I have got over mine, and even now I still get off days. What I would urge anybody to do is seek professional advice. GP’s are busy people but they are marvellous people who really want to do the best for you. So even in these strange lockdown times they are available for help, so book an appointment, it may be a telephone consultation but it will be a fantastic one. Do it now!

Baclofen pump refilled

 Friday was stressful! A trip to UCHL https://www.ucl.ac.uk/ Getting my Baclofen pump refilled is a  twice yearly event, I had the operation to get it put in last February so almost a year ago 😲 time flies when you are living under pandemic conditions. The pump dispenses Baclofen directly into my spinal cord. I have Multiple Sclerosis and the Baclofen helps my body deal with spasticity. Multiple Sclerosis attacks the nervous system and to date there is no cure. The MS society is a great source of information and always searching for a cure. 

Mental health problems matter

 I am the first to tell someone with mental health issues to seek help. I have been on antidepressants for years and if for any reason I don’t take them for a few days I can feel the darkness gathering.  I suffer from Multiple Sclerosis am captive to my wheelchair 🦼 or my bed and I can no loner stand so have to be hoisted from one to the other. I am catheterised and awaiting a stoma operation. Coping with all of that makes me depressed I am not saying that as a Top Trump it is just for those reading this to get a little background as to why I have needed antidepressants, if I entered a ‘bad health pissing competition’ I would be a long way from  Top Trump. But I know people will read I have been on antidepressants for years And think why does he need medication to cope.

There I go making excuses for suffering from depression, that’s crazy I will never meet you and you don’t know me from Adam. Yet I feel I need to justify myself to you🤔. All I want to say is if you are suffering there is no harm seeking help. Don’t bottle it all up or hit the bottle I can tell you it don’t help. The best thing to do is talk to someone and if that someone is a doctor 👩‍⚕️  👨‍⚕️ male or female all the better. They are trained in helping. I am not as you can tell from this post. I am just a well meaning old man who wants the best for you especially at the moment with Covid and another lockdown about to start. 

Catheter change

 It comes round with amazing rapidity, every four weeks. I cannot say it’s like clockwork but almost. I was due on Tuesday but no show same for Wednesday and Thursday. Friday meant a call to the nurses and yep I had been overlooked.😊 Late yesterday we got a call to say “be with you tomorrow “ and sure enough she turned up rang the door bell 🛎 and it didn’t work 🙁. She called from the car as she was already pushed for time could she fit me in on her way back. Goodness know why the door bell 🔔 didn’t want to work but Heather checked it and it was fine 😯! Well to cut a  long story short she came back about an hour later and all is fine. It’s been that sort of day. Nothing horrendous but lots of little things chipping away at our self confidence. 

Things like that wear a person down. With all the Covid crap it’s just knocking the corners off of the pair of us. I know we are all in this together but today has been hard. My multiple sclerosis hates stress and as a couple living under lockdown it has at times been stressful, today whilst trying to put some aftershave into the basket on our Tesco home delivery slot I managed to delete our order for next Friday. Sorting through that was stressful🤯. Still a very nice man on the helpline managed to get a delivery slot for us for a couple of days later so eventually calm was restored. It’s been like that all day nothing going right but causing maximum aggravation and both of us have suffered mentally. People up and down the country are suffering mental health problems in these unusual times. And I will always advise anyone suffering with any health problems to seek medical assistance and if you are feeling depressed or you feel ‘low’ contact your doctors surgery. In these strange times it can feel as the world 🌍 is against you but it is nothing personal it dislikes everyone at the moment. I take antidepressants everyday and maintain they are the best two tablets I take each day so if I can seek help anyone can.👍

To blog or not to blog

 I have not done this whole lockdown thing very well. I was recovering from an operation in the early stages and from May I have been up and down with my MS and also my bowel problems. Today has been a marvellous day we actually ventured out and even ate out😊 fish and chips sitting in the car 😂 eaten looking out to sea at Cliftonville.

We then drove along the seafront to Westbrook to Barnes car park to see the waves breaking over the prom as they crashed on the concreted defences. I would have some photos for you but we didn’t think to take the camera 📷🙁. 

The reason for this post is shall I give up blogging completely? I have loads of time but so little inclination now to actually get this rubbish down on to the screen. I get so few page views now  I don’t feel I am contributing anything to the blogging world 🙁

Hospital appointment and masks

I had an appointment to go to Canterbury hospital today. My catheter has been blocking a lot recently and it was decided to change size, the district nurse tried but the bigger one would not go into the smaller hole. I should explain that I have a supra-pubic catheter. I changed from urethral due to amount of infections and must say I am very pleased and now get lots less infections.  We arrived at the hospital early because there was so little traffic and when we went in we were wearing masks, the nurses asked would we like them to mask up, YES!  They explained from the 15th everyone will have to wear masks but until then they would do what the patient is comfortable. Personally I can’t see why wait eight days do it now. Well that was another day for me with Multiple Sclerosis. I hope your day has been okay. I’m going back to sleep I came to bed when I got home and am still tired, MS wears me out doing nothing so a trip to hospital has exhausted me!

Multiple sclerosis bites back

I have been in bed today. I did get up just before five but the rest of the day I have been asleep. Heather has been coming into me at regular intervals to ensure that I am drinking plenty of water but in seconds of settling down I was asleep again. I think that it is my MS biting back at me for feeling okay for the last couple of days. I haven’t done anything that has worn me out I just think it is my MS.

Help depression with photography

I started blogging twenty years ago I posted 100’s of posts some bad most even worse than that, then about four years ago I deleted everything! Five different blogs and all posts I erased fifteen years of work. Why? Because one day I woke up depressed very very depressed. My depression was ongoing I had been taking antidepressants for years but that day I was super depressed! I couldn’t cope and days in bed feeling like crap eventually gave way to feeling slightly less depressed and slowly very slowly I got over things! I am not there yet but I am coping.  My Multiple Sclerosis has taken a turn for the worse and I am a lot weaker than I have ever been. Cheerful ain’t I? Cheering you up yet.

The reason for this post is to help other people and at the same time help myself. Well maybe we can both gain from the words I am feebly trying to get down. I read an article in the amateur photographer magazine today. Yep it was about how photography can help people suffering from depression. I deleted my photography blog on that day five years ago, years of posts hours and hours of blogging not so many photos. My photos look awful even the good ones are bad so maybe no great loss to the world when I hit that delete button! But I suffered oh boy I suffered. All of those posts those dreams the hopes the memories were gone, no more could people read about what I had enjoyed putting out for anyone who wandered world. I had planned to use film cameras made since my arrival here on earth, anyone who reads the amateurphotographer will have seen a regular article about using a different film camera for every week for a year. It was so popular it went on and on finally finishing after ten years and five hundred and twenty different cameras!

Back to you and your depression, anything that can get you less depressed is good! I know about stopping and concentrating on the shot it helps me and it helped the people in the article I read today! The breaking of the norm the stopping the waiting, the looking at something other than whatever your brain wants you to hang up on. I recently heard depression described as like listening to a out of tune radio, it’s always playing in the background, you can’t hear it properly but you listen to it all the time and in doing so you miss out on so much good stuff that’s going on around you. Well that’s me done for tonight, it’s twenty to one in the morning even though this iPad recon it 16:40. One of the many things I need to sort, I only got this on Monday so still on a learning curve. I’ll finish up tomorrow as I wanna add some photos and links and mention lockdown

Lockdown, how has it been for you? In all honesty for me it has been much of the same as normal. Heather has to hoist me out of bed and do pretty much everything for me! I have helped with comments on what to get for shopping 👍 not always useful. I know many people have been finding it very difficult. There are any different places to go for help and my answer is always seek help. You know it makes sense but the hardest step is always the first one. I am often guilty of leaving things to long, last year I ended up in A&E blue lights and everything with suspected sepsis. I got better with antibiotics! The hardest part for me has been not seeing the family our daughters stop at the front gate and have a five minutes chat but it ain’t the same is it. I know all of you reading this will be suffering your own personal problems and FaceTime is good but it’s not a patch on meet-ups and a chat over a brew.

Lockdown lazy day

It comes round every month a regular as clockwork! Catheter change day. Today I had two nurses come and visit me all done up in PPE  and as smart as two new pins! One was my regular district nurse and the other a student nurse! The students voice seemed familiar but behind the mask and stuff I didn't recognise her. She used to work at Strode Park in Herne where I go for my respite care and I hadn't seen her for over six months so maybe I can be forgiven for not recognising her. The change was a regular one but because of all of the recent problems with blockages the idea was to fit a larger catheter.
Sounds simple right? The reality was far from simple. Small hole and larger tube didn't mix and after a few attempts it was back to fitting the normal size one again, so when lockdown is over its a trip to Canterbury hospital urology department and get them to do it. I had general anesthetic for the original so maybe I'll be knocked out again for them to sort it!
All this messing around left me exhausted so I have been in bed all day sleeping. Multiple Sclerosis affects me like that, the slightest hint of trauma and I am exhausted, I slept most of the day Sat in the chair for dinner and straight back to bed! 

Lazy day listening to Music

After four visits from the District Nuses in three days I am up and about today. Well about as I can be in my electric wheelchair. My wife Heather did boiled eggs and soldiers for lunch. Do any of you go through the daily "what do you fancy for lunch today moment"? Well today I was ready, normally its a daily game of 'no we had that on Friday' or 'no that means  going to the shop' but today I was primed  locked and loaded, I saw a tweet about the colour of proper free range eggs. So for the first time in living memory we decided without debate!!!

As it turned out we had eggs and bread butter but some othe staples necessitated a trip out to the shops. Well I kicked back in my wheelchair and selected Apple Music stuck my new headphones on and am still here two hours later!!! I took them off while we ate our afore mentioned lunch and a couple of other times to answer Heather's questions but I have had an enjoyable time just chilling listening to sounds with the laptop on my lap on a lap tray (where else would a laptop go?) I am currently listening to Joni Mitchell I have had a great few hours headphones on, one eye on the garden bird visting the feeders JUST CHILLIN

How are your new year resolutions going?

Mine are great 👍 I never made any! Yep I know I need to loose weight, if I could I would but I never shamed myself into setting unobtainable goals! I ain't going Vegan Veggie or any of the stupid fad  names they label you with as soon as you deviate from 'the norm'  what is NORMAL try Google for that and it comes up with one hundred and seventy five million results?
Abnormal only got twenty three million which in itself tells a story!
I don't really know why I am writing this post ? It is exactly one AM as I type this line, I have been in bed all day recovering from an emergency catheter change this morning. For those that don't know me I suffer from Multiple Sclerosis and my body has given up working! I cannot stand or walk, I have to be hoisted in and out of bed and get about in an electric wheelchair ♿. I am currently recovering from having a Baclofen pump inserted inside my body to administer drugs direct into my spine! I was to say the least concerned about having this pump inserted under the skin on my stomach and then the catheter fitted round my body once again under the skin and into my spinal cord!
Thinking about it and the actual reality were miles apart and the fact my legs are now tremor free and almost pain free make any fear I had well worth it!
Back to today and the blocked catheter! I woke up feeling uncomfortable but nothing new there then but by nine o'clock I got my wife to call the district nurse! I have lots of debris in my urine and the catheter had become blocked! The nurse was great and got here ten minutes after the out of hours service called her! Unfortunately it had taken them an hour from our phone call to her actually getting told to come and visit me! By the time she arrived I was in lots of pain and discomfort. My MultipleSclerosis then kicks in to overdrive and really wiped me out for the rest of the day! So a day in bed sleeping may sound like bliss to you but MS hit my with a day of severe fatigue!
 I could go on moaning about my day but I know you don't want to hear my woes. I only came on the blog  because I noticed that I have not updated anything yet this year😱
Still that's this update over and done with as I now feel tired enough to try and sleep.😄 Good night world I am going to try and feel well enough to actually get out of bed tomorrow !

Multiple Sclerosis and UTI urine tract infecion

I have had multiple sclerosis for getting on for thirty years I was diagnosed twenty six years ago!. Time flies. Our then three year old son is married and living and working in Qatar.Our daughters are no longer school girls but mums in their own rites. Grandsons who weren't born are grown and at secondary school, and one who is the youngest will be going to big school come September. I that time many many things have changed with my body. I used to tile roofs and walk up and down ladders! Now I cannot walk at all. I am in a wheelchair and transfer via a ceiling hoist. I have a through floor lift to enable me to get upstairs. I did have a stair lift but that became to dangerous, an accident waiting to happen. I have got myself a catheter, first I was self characterizing then I opted for a supra pubic catheter where an incision is cut in your gut and the bladder and I have my catheter changed every eight weeks. This has been happening regular as clock work for nearly five years without any infections. I used to get a UTI every month previously! But last week I got a UTI and it has knocked me for six. Temperature shakes urine not flowing. I had it all, but today I started a course of Nitrofurantoin antibiotics. Oh The joys of MS. I am possibly getting a stoma bag for my constipated bowel  soon. Same thing just for solid waste not liquid! #catheter #MultipleSclerosis #UTI #Stoma

ei141rc smoke alarm Fun

Do you know why smoke alarms start to beep in the middle of the night? No it's not because they  are designed to wake you when you are enjoying your ZZZZ's it is as simple as you needed to replace the battery earlier. They choose the night time because that is when the house is at it's coolest and the battery was no longer strong enough and because you didn't replace it finally it gasped its last and went the way of all batteries, to battery heaven!! Make sure you dispose of the depleted battery safely!!!!. So now you know the smoke alarm hasn't been on a mission to awake you unnecessarily and it hasn't got an evil side to it's normal placid temperament look on the bright side IF THERE HAD BEEN A REAL FIRE YOU WOULD BE AWAKE. I doubt that you  will have forward planned for this situation?? No, I never either! so safe in the knowledge  there is no fire just the alarm telling you that you have been a numpty and not replaced the battery, go back to bed and try and sleep. I managed but my wife didn't.😪😪 which means I dont sleep. "are you asleep" has always seemed a counter intuitive question because if you get an answer to it the answer can only ever be NO!!!. I am in another room due to my illness (Multiple Sclerosis) I have an airflow mattress and a sleep apnea machine making competing noises all night so an intermittent beep from a smoke alarm ain't got a chance, I would only wake if it was a real WAKE UP CALL that thing is VERY LOUD when called to inform you the toast has burned.
Daylight eventually arrives and we head off on a shopping trip to get stuff including a replacement battery, STUFF included a visit to the hairdressers for me. My hairdressers work on an appointment system but did we book? Half an hour to waste before I got to have my snip. A grade two all over and we were off to get STUFF. Eventually we arrived home and it was then that we discovered what you have already guessed without the said battery. So a  trip to the local newsagent to buy the battery we decided we wouldn't buy from there because the turnover wont be as fast as a supermarket. Battery finally installed  and guess what the beep continued. TO BE CONTINUED MY FINGER CANNOT TYPE ANYMORE
 So our fears were confirmed it was the battery okay and the Alarm faulty? Do many questions and we still had an alarm that continues to beep. Well no more could be done today or as I am writing this tomorrow I if we're of a pedantic nature no more could have been done yesterday. I am now writing in the present because today is today and yesterday has been and gone. (Song title anyone) Because of my bowel problems we wasn't able to do anything  until after 1:00 today. Heather decided after several battery changes and recurring the Alarm that a new alarm was needed. The base separated from the base and armed with the offending article she heard off to City Electrical Factors in Broadstairs to get a new one. Twenty some odd squids later she reruns and fits the new one. It just slides in and we expected that to be it. It beeped a few times and was then almost silent.
This all happened today. And today was the day of England's match against Croatia so I am now home after the match (England lost) and am in bed listening to a beep every few minutes. So good 🌙 I will continue this tale tomorrow which will be relayed to you in the present sense  of you fill my dift.