Hectic Thursday

Hi all and here we are again, another day, another Thursday and another crap night,s sleep. was up and down all night no particular reason just could not settle down. until about 4.30, then slept like a log until 7.45.

The weather is not so good today, very wet and dull although they do say it will brighten up later, so with weather like this the best place is indoors I think. Just looked out the window and the rain is coming down quite heavy, carer just turned up " Soaking Wet" so best place today is Indoors I think.

Have Pauline coming round this morning, she has just phoned to say she will be here about 11.00 am so will look forward to seeing her and also my sister and her friend Chris are also coming today to do a couple of jobs about the house so lots of tea making and washing up today for me.

True to her word, Pauline arrives about 11.10 am, bless her she has brought a load of washing she has done for me and ironed all my shirts, so put on the kettle and make a coffee. we need to take a short walk around the corner to the local Tesco Express to get some more milk for the other visitors, Don,t want to run out when they are here.

Had a walk around to tesco between the rain showers got the milk and back just as Eileen and Chris turn up, so back out to the kitchen to make more tea and coffee. Eileen sits and has a chat while chris goes and fits the new bolt to the toilet door and then goes and trims the Buddleia in the back garden.




Well everyone has now gone, the washing up is done and I am knackered so of for a half hour nap, but a very enjoyable few hours with family and friends around, so until tomorrow and the dreaded Methotrexate I will say Bye Bye.

A bit of a moan

Good morning one and all, another day dawns and I am feeling the effects of yesterday,s walk around Asda shopping, A good idea it might have been in theory, but in practice not a good idea, I can understand the thinking by my neurologist about strengthening the muscles and fully endorse it, what I have to do is not let myself get carried away with the enthusiasm.

The idea of being able to walk for an hour unaided is a great incentive to regaining my independence,  but at what cost, after the turmoil of the last 10 months leading up to the diagnosis of Dermatomyositis in May this year and the range of emotions I went through it is finally dawning on me that my life has now changed dramatically at the age of 68.

A total rethink was needed and that has now taken place, I have a very good supportive family and friends around me, and it is obvious to me that instead of thinking of all the things I cannot now do ( The hardest was realizing that I could not make the trip to Kent for my Niece,s wedding at the weekend), I need to concentrate on the many things I can do,

I may have lost a lot of my mobility but the brain is still as active as ever, so rather than get to a situation where I sit around all day watching TV, reading, feeling sorry for myself, etc, I need to look again at some of the skills I possess and put them to use, so as well as writing my blogs I am re starting my Genealogy Company " Portsmouth Genealogy" assisting people with their family history research within Portsmouth. I am also restarting my Greeting Card design company  "New Horizons" Both these projects will enable me to regain a portion of my independence, and give me the opportunity to earn a wage (although limited). without having to travel around, as the genealogy can be done online and using the vast archive of material I have acquired over time, and the Greeting Card design can be done 100% within house.

Well It is now 2.45 pm My Brother pat turned up to see me about 12.30, and brought me up to speed with the family and especially the wedding at the weekend. Tomorrow my Friend Pauline will be down to see me for a couple of hours, she always comes on a Tuesday and does a bit of tidying up for me and we have a good chat, also my Sister Eileen and her friend Chris will be round tomorrow to fit a new bolt on the toilet door and to trim the Buddleia in the garden as that has started to get out of control a bit ( A lot Actually)

We not very much happening today apart from me rabbiting on so until tomorrow its goodbye all.

Another Busy Day.

Welcome to another Tuesday and another busy day in the life of Frank.  Woke up at 7.45 am with the builders making a commotion putting up the ladder. Not a bad night last night, slight problem with reflux about 3.15 but apart from that a decent nights sleep. The builders are here bright and early so hopefully they will get the first coat of paint on today and be finished by tomorrow evening.

The weather is a bit iffy today, not that bright but cloudy and muggy, anyway Pauline phoned to say that she will be round about 10.15 am as I am down to Eastney health centre for blood test at 10.35 and then off to Asda for shopping, The blood test went well, no problem getting blood today, think debbie has my veins sussed by now, either that or her parents were vampires, so now back to the car and off shopping at Asda.




Arrived at Asda at 11.15 am. Have not brought the wheelchair today, as the Consultant wants me to walk an hour a day by the time he sees me in October I have decided to walk around the store today with the trolley. As long as I have the Trolley to hold on to and Pauline with me I should be OK.

Well That took just under the hour to do the shop and I feel really good that I have done this, Feel really great so will have to make sure that I don,t get any aches or pains this afternoon. hopefully all will be ok, a good exercise routine and something I can work on.

Back home now for coffee and then Speech Therapist visiting this afternoon about 2.30 pm.

Therapist arrives about 3.30 pm and after a short discussion and a couple of tests decides to refer for another barium swallow to check the muscle function  for swallowing before deciding on a course of action to improve swallowing but has to admit that I am making positive progress. 

And last but not least, I took this photo yesterday  " This is me at the laptop " Hello everyone "

A busy Monday.

Time for Coffee.

♬♬♬ Hi Ho, Hi Ho, Its out of bed we go ♬♬♬, Oh welll a start of another day, and a busy one at that, Have a lot happening today so need to make sure I am up and ready. Not a good night last night, went to bed about 11.45 pm and didn't really settle until about  3.30 am, but then slept through until 7.45 am so need to get a move on with breakfast. Carer will be round about 8.30 and then I need to get shaved.



So What is happening today then ?. well The builder will be here about 9.00 to start to get the front bay ready for repair and decoration, My son Gervase will be round about 10.45 am as he is taking me up to the QA Hospital for my appointment with my Neurologist, I also need to go shopping at the retail park for another hand blender, and then home to collapse in front of the TV. Yippeeeeee, a lovely life !!NOT!!

Builder at work

Breakfast of Puree porridge has been eaten, Carer has  been, I am shaved, Groomed and dressed so ready for the day ahead and the builder has just arrived so he will make a good early start on the front bay.

The weather is good today so the builder should have no problems getting to grips with getting the bay stripped down ready for painting tomorrow, there is a slight amount of repair work to do but that should not take more than an hour or so

Just had a phone call from my son gervase to say he is on the way so, have a quick coffee and then of to the Queen Alexandra Hospital Out Patients clinic to see the consultant, the appointment is for 11.40 am.


Gervase arrives about 10.50 so into the car and off we go to the Hospital,  not a bad journey up ther takes about 20 min,s, as there are roadworks at the junction of Copnor road and Burrfields road and we arrive at QA about 10.25. Gervase drops me off at the out patients entrance and then goes to park the car.

It is busy here today, lots of people but Dr Gibb calls me at about 12.05, appointment was for 11.40 so not too long a wait.

Its all down to the toss of a coin 

Seen Dr gibb and he is pleased with the way I am progressing and wants to see me in october, he tested my arm and hand muscles, they are showing more strength now, although I am still in active disease. we have decided to maintain the Methotrexate at 15 mg per week and have reduced the Pred down to 25 mg daily.  he is concerned that the speech therapist has been a little slack in giving exercises to help the Dysphagia so I am phoning the therapist today for a review next week. He has set me a target of walking for an hour a day by the time I see him in October, I will walk everyday and gradually build up to 1 hour a day, he maintains that this will help and be of benefit and I am in total agreement with him on that point

So all in all a good consultation with lots of positive points being raised, also we are reducing blood tests from weekly to fortnightly and then monthly.

Now all that is left is to get to Curry,s at the retail park and find a decent hand blender and then home for a coffee. found a nice Kenwood  hand blender for £20.00 so happy with that so a good day done, now home, Coffee and Sleep. so until tomorrow, have a good day.

Sixteen weeks on.

!!!Yipeeee !!!! another decent nights sleep again last night, only woke up once between 11.45 and 7.15 am so a good 7 hours sleep, I could get used to this. won't be falling asleep on the sofa today then.

Queen Alexandra Hospital

It does not seem like 16 weeks ago that I was taken to the A&E Department at Queen Alexandra hospital at Cosham, Near Portsmouth and kept in. This was on Easter Sunday and is a day I will never forget,  I had been Diagnosed in Dec 2010 with a Cup and Spill stomach after having swallowing problems since the November, and after having an Endoscopy in the Dec, and was put on a course of Medication "Omoprazole" which although,helped did not make a lot of difference. I had a Barium Swallow on the 31st April which resulted in a exchange of views between the Hospital and the GP.

Southampton General Hospital

On the Tuesday I was visited by the Neurologist who said that he needed to do a couple of tests one being a EMG which he could do at QA and a Muscle Biopsy which he wanted to do at Southampton. At this point I had lost a lot of weight going from 13 stone to 8.5 stone and could not swallow solid foods so was not eating, I was put onto a 10 hour feed every day via a Gastro Nasal Tube.

I had the EMG Test on the wednesday and on Friday 29th April at 3.00 am I was transfered to the Henry Graveson Unit at Southampton General Hospital.

I was at Southampton General until the 13th May when I was transferred back to QA. While at Southampton I went through a series of Tests and Scans Including Ultra Sound , CT Scans, MRI Scans, Deep Body Scans, Pulmory tests,  Heart Echo Scans, blood tests, X-Rays and also the muscle Biopsy, I was diagnosed  at the end as having Dermatomyositis. I was still on the 10 hour Gastro Nasal tube, for feeding.

I was back at QA until the 23rd May when I was sent home under a re-enablement care plan. and the Gastro Nasal tube was removed and I was on a puree diet.

I have progressed a lot since the initial diagnosis, although still on a puree diet, swallowing is improving very slightly, My weight is now up to 10 Stone, and they are sorting the medication, at the moment I am on 30 mg Prednisolone  daily plus 30 mg Methotrexate on a Friday, along with daily doses of Vitamin B Compound. Thiamin, Calci Chew, and a weekly Folic Acid tablet. I still have trouble walking any distance or for any length of time so still need wheelchair when I go out, and also still cannot raise arms much above the shoulder, but I can manage most things myself given time and patience (although still need a daily carer to come in) so all in all things are changing for the better. I am back to see the consultant tomorrow so hopefully Prednisolone will be reduced again.

I still have a Dietician, Speech Therapist, Physiotherapist, Neurologist involved in my care and treatment along with my GP and also have a daily care package and weekly visits from the District Nurse team. I have a Hospital Profile bed installed at home.

The Wedding.
I received the first wedding photo of the happy couple today so thought I would include it on todays blog, My Niece Jodie married Dave Yesterday and they are off to Tuscany today on Honeymoon.

its the wedding today

A Good Nights Sleep ???

Well that was one of the best nights I have had for a while, after feeling crap yesterday, after the Methotrexate, I had a really good night last night. Had my main meal at midday yesterday and just had a light meal for supper about 6.30 pm. went to bed (early for me ) about 11.00 pm and slept through until about 2.15 am, woke up for toilet then back to sleep until 6.45 am. Hopefully it will be the same tonight.

Well all the family will be down in kent at my niece Jodie,s wedding to Dave today, it is taking place at 12.30, so it is probably all over by now as it is now 2.20 pm. hopefully the weather will stay fine for them and hopefully I will find out soon how it all went, I wish so much that I could be there to see them get married, its times like this that I really do detest this disease.

I have received 1 photo so far. This was sent by Jodie,s brother Arron, I would presume that this is taken prior to the ceremony.

Also found this photo of Jodie at Thorpe Park, a few years ago with her brother Arron to the left and my Son Gervase to the right. how time flies.

Well its been quite an uneventful day today, weather is not to bad, and breathing is quite good today, the muscle flare seems to have receded a little today, although still a lot of redness on the hand/finger joints and the elbows.

Have spent the day on the computer working on the websites and blogs, also doing a bit of family history research.  will look forward now to an afternoon of TV and receiving some of the wedding pictures via mobile phone or facebook.






Well not much more to say about today really, so until tomorrow, will sign off.

One Day To Go.

Good Morning Folk,s In the words of Herman's Hermits

♪♫♬ Woke up this morning feeling fine ♬♪♭
♭♪♬ There,s Something special on my mind ♫♪♪

Dave and Jodie 2010

Well one day to go until my Niece Jodie gets married to Dave.  I was hoping to get to the wedding but unfortunately this is not possible, as the wedding is down in Kent, which is where Dave originates from.
To try and do so in one day would be too much at the moment and it is not feasible with my dysphagia and my lack of mobility ie (getting in and out of bed) to stay overnight in a hotel.

The wedding is being held at Boughton Monchelsea place, Nr Maidstone.  hopefully the day will be fine and sunny for the happy couple. and I look forward to seeing the photo,s on facebook within an hour or two of the wedding LOL.

Well folks its Friday again " Methotrexate day " so not a good morning today, always have a bad few hours after taking the medication, nothing in particular just feel very UGHHHHH for a few hours, but it normally wears off later in the day so not a major problem in the grand scheme of things.

Did not have a very good night last night but that was down to me. Woke about 3.30 and felt thirsty,should have known better at my age and just had a sip of water but OH NO not me made a coffee and had some biscuits then went back to sleep woke at 7.00 am with terrible acid reflux and heart burn (will I never learn). Answers on a postcard to "Serves you bloody well right . UK ". So I then spend the next 30 minutes walking around to disperse all the wind etc, still what else is there to do at 7.00 am in the morning.

Well it is now 1.40 pm, and all is settling down here, I managed breakfast at about 9.30 and the reaction from the methotrexate is subsiding so all is going back to normal, what a jolly life we lead, So must think about getting dinner on the go soon, Roast Chicken joint today, with steamed Broccoli, Cauliflower and some mashed potato, this will go down well with some chicken gravy, at least this way I only have to Puree the chicken, the vegetable can just be mashed down with a fork, as the swallowing is getting a little easier, although not by that much.

No visitors today but that is probably just as well after the week that I have had, it is nice to have a day where I can now relax in front of the TV or work on the laptop, now that all is settling down. so I will leave you all to enjoy your day while I go and get my dinner and will be back tomorrow with another exciting episode of life with Dermatomyositis. and hopefully some wedding photographs. Tatty Bye Everybody.