Fatigue

A Sh*tty Week

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

 You know when you have one of those weeks when it feels like your body is going through a checklist of every condition you have and providing you with all those symptoms? No – lucky you! Yes- you have my sympathy. I have just been through one of the toughest weeks I have had in a long time, it has been relentless the onslaught of health issues. It feels never ending and I have no idea why this week has been like this.

I don’t like to make a big thing of it on social media. Most of my friends also have chronic illnesses and are dealing with their own shit. They don’t need to hear me moaning about mine. There are two people are am truthful about how I am actually feeling on a day to day level, Mr Myasthenia Kid and my best Cyber mate Beverley B. Beverley and I speak daily via WhatsApp we have been really good friends for about 18 months and “friends” for nearly 3 years. Beverley started following me on Instagram just after I lost Mollie and Frankie. We would chat every few days and we just hit it off. She left Instagram so we started chatting on WhatsApp. She is hilarious and always makes me shriek with laughter. Mr Myasthenia Kid and Beverley B are what get me through weeks like this.

I first thought something was amiss last Sunday, we went to visit a friend only to discover we had a puncture in our rear tyre. Mr Myasthenia Kid and our friend attempted to change the tyre but the wheel nuts were too tight to get off. I suddenly remembered we have cover with Green Flag and called them out. By the time we got home, an hour later than planned, it was like someone had taken my batteries out. I was so tired I couldn’t think straight let alone string a coherent sentence together. If I call it fatigue that really doesn’t do it justice. I took my blood pressure boosting medications just in case I had low blood pressure as that make me tired but they didn’t halt the fatigue. By 1700 I was in bed, I really couldn’t handle attempting to sit upright etc. 

Monday

I had my hairdresser come and sort my hair out. I took a photo of myself the other week cuddling Dembe and all I could see were the grey hairs framing my face. I then realised I was long overdue my hair being done as it was last cut and highlighted on 26th July! Whoops. I knew I would be tired after having that done so deliberately ensured that I had no plans at all for the remainder of the day. It was a netflix and crochet afternoon. By 1900 I was shattered again but not as bad as Sunday. The main symptom today was period pains with no period accompanied with terrible hot flushes. The hot flushes were the kind where your bra and knickers are soaked and you feel so manky you need to go and have a shower and change. Which when you have a limited amount of energy to start with is no fun.

Tuesday

 Knackered again. Today it was back spasms. Every time I lifted my arms I would get an electric shock which would cause me to take a sharp intake of breath. My coccyx was also sore all day and I have absolutely no clue why. I just couldn’t get comfortable lying or sitting.I stayed up until 7.30pm as Mr Myasthenia Kid was working the night shift and I knew it would be hours before he would leave for work. However by 19.30 I was so uncomfortable I couldn’t stay up any longer.

Wednesday 

The first day of the week where I have felt relatively ok. I slept with Jay out of the house but I did keep waking with any sort of noise . It wasn’t my usual level of sleep. As I was feeling ok I decided I would work on my wall hanging that I have been making for the last month or so. During the afternoon I noticed every time I stood up my head hurt. Which when this happens I always freak out as it can be the sign of a CSF ( cerebral spinal fluid leak ) leak. I have had two previous spontaneous leaks and I really don’t want to have it happen again. I decide not to dwell on it and use the fact both Dembe and Jay are in bed asleep to crack on with something I enjoy. By the time I finish my neck and back are screaming. I end up getting two hot water bottles one for my lower back and one for my neck. This helps it ease a bit. What I can’t get over is how utterly exhausted I am…..again. The fatigue this week has been utterly overwhelming. I am in the position where stringing a sentence together or holding onto my train of thought is difficult. Jay is knackered too after the nightshift, we end up going up to bed at 18.45. Jay is asleep soon after, I am awake until around 10pm.

Thursday 

I wake up and from that minute on-wards for the next few hours I have diarrhoea. I ended up taking 6 Imodium to stop it as it is exhausting constantly having to get to the bathroom in a hurry. My stomach is cramping really badly. I have a conference video call with Facebook this afternoon and I am wondering if I will be able to a) cancel without too much fuss or b) attempt to get through it. I am a coward and seeing that two other people have pulled out already I decide to put on a brave face and attend the call.  I have so much makeup on trying to look like I am not a corpse it is crazy. I have drunk 4 cups of peppermint tea in an attempt to soothe my angry bowels. Thank god the imodium has worked. However the last 30 minutes of the video conference are sheer agony. Out of nowhere my bowel adhesion pain starts to kick off. It was so bad I was envisioning that I would faint during the video call. I keep praying that whoever is running the meeting will call time before I collapse. I can barely breathe the pain is so intense. It is like a hot knife has been plunged into my abdomen and is being dragged through my entrails. The call ends and I get upstairs as quickly as I can to take every single pain killer available. If I can’t get on top of the pain I am going to have to call an ambulance. I am not being melodramatic, I am on an 8.5 out of 10 on my pain scale. 10 for me is passing out with pain and this is getting close. I message Mr Myasthenia Kid, telling him I am in a bad way. I don’t want to stress him out but I also don’t want it to be a surprise if I tell him I need him home now. Then as quickly as it came on, the pain lessens and disappears over the space of an hour. I am yet again left exhausted, too fucked to do anything. I’m in bed by 1800.

Friday I thought after the week I had the universe may take it easy on me. Who am I kidding? The universe hasn’t finished with me yet. I wake up with a migraine, I take sumatriptan and 3 alka seltzer. I am really out of it and spend the morning lying on the sofa. Doing little bits and pieces on Facebook to put a Guide together for new members on the group I help admin. I am getting fed up with constant exhaustion not just fatigue . The migraine goes, well it recedes enough for me to be able to spend an hour or so on my embroidery machine faffing around. However I have now been left with vertigo. I have to be really careful not to turn my head too quickly or I fall over. Not just stagger but fall over end, up on your arse, fall over catch my drift? Half way through doing the piece that I am working on I am wondering if this was such a good idea. The problem is now I have started I can’t stop. If I do it will cause issues with the design and it may not line up properly again when I start again. Which means 30 minutes worth of work will be for nothing. I have never been able to accept that there will be days even weeks sometimes when I can’t do the things I want to. So I push myself well beyond what I should. I end the day with a resurgence of my migraine, more sumatriptan and alka seltzer. I do go to sleep early.

Saturday

I wake up at 4am, I try really hard for almost two hours to get back to sleep but I can’t. I am still fucking exhausted but no amount of sleep relieves the fatigue. Within minutes of being upright it is obvious that yesterday’s migraine is back for an encore. Why it won’t just fuck off and leave me alone I have no idea. At least the vertigo has gone. At 06.30 I go back to bed, I take my usual cocktail sumatriptan and 3 alka seltzer – I feel like I should have shares in both. I still don’t get back to sleep. I lie listening to a podcast about the Salem Witch Trials, it is interesting but I would much rather be asleep. At 08.30 I give up and get up. I feel drunk due to the tiredness. My head is hurting but it is at bad headache level rather than migraine ferocity. I have got to the point where I really want this week to fuck off and do one. Is it too much to ask for a break? I can guarantee that most social media acquaintances think I have had a good health week because I have produced a few bits of sewing this week. What they don’t see is the other 99% of the time when I am having my arse kicked by multiple conditions . Being able to produce those few pieces of creativity is what keeps me going when a week is as shit as this one has been. Today will be mainly spent lying on the sofa wishing I was able to actually do the things I want to today.

So fingers crossed for a better week eh?

PS I forgot to mention the numerous episodes of pre-syncope throughout the week!

Dembe

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

I don’t write about Dembe all that often on this blog, mainly because he has his own blog. However this last week has been a roller coaster of emotions. I always try to share as much as possible with my readers ( and thank you for reading!) whilst holding back a little so I have some privacy. Dembe is a huge part of my life and is my baby boy. So you can imagine the emotional turmoil I was in when he had to go to the vets all day. It has had a knock on impact with my health, leaving me exhausted, several migraines and generally feeling well below my usual level of shittiness.

 On Wednesday last week ( 29th September ) Dembe had to go to the vets for the day to have some X-rays taken of his front legs. Dembe has had an intermittent limp for a few months this year and conservative measures of rest and pain relief were just not working. He was also showing signs of being stiff when he got up after being laid down for a while. All things we should not be seeing in a dog that isn’t even three yet.


Dembe had to have both legs x-rayed, 3 different positions for each one and to do this he would need to have a general anaesthetic. We really didn’t want him to have to under go a G.A but we had done all we could and we needed to know what was going on with him and that he wasn’t in pain.


Mr Myasthenia Kid dropped him off at the vets at 08.30am and so began the longest day of our lives. We were told that we should hear something by 2pm and that if we hadn’t we should give them a ring. Jay caved at 13.50 as he needed to know Dembe was ok. We found out that he was fine and that he had been out for a little walk and  had been to the toilet. We were told the vet should ring us back in an hours or so.
The vet rang back around 90 minutes later and if it was actually possible those 90 minutes seemed longer than the whole of the rest of the day. Sadly she told us that Dembe has bilateral ( both legs ) Elbow Dysplasia, – you can find out more about ED here. The vet told us that his left leg is more badly affected than his right. However both legs are only showing very subtle changes on the x-rays. The  x-rays will be sent to an orthopaedic specialist who will provide us with their expert opinion.  The good news was that there were no bone fragments floating around the joint, so he wouldn’t need any immediate surgery. As the condition was discovered early treatment will be conservative management, getting his weight down, physiotherapy and hydrotherapy. He will adore hydrotherapy as he is a water baby, as any self respecting Labrador is!


I have never been so glad to see my baby boy in all my life. He really wasn’t with it when I saw him walking down the car park. Everyone kept telling us what a lovely boy he is and they thought it was so sweet that he had come down with his blue dinosaur. The vet nurse talked us through after care and said he would probably be out of sorts for 24-48 hours. She also told us that there was a risk of him having diarrhoea as that was a side effect of one of the medications he had been given. They had also given Dembe’s nails a trim. She said that he doesn’t like his legs or feet being touched, I said no doing his nails is a two person job! 


When we got home I said to Jay do you think he wants to go around the block but Dembe made it clear that he didn’t want to by going straight into the house and jumping on the sofa with his carrot.


 Our little space cadet was really out of it.


Dembe had a really awful time after the general anaesthetic. He cried solidly for 24-36 hours, only stopping when he slept, briefly! Or when he was eating or out for a walk. He had awful diarrhoea as a side effect of the medication he had been given. As he won’t go to the toilet in the garden this meant Dembe had to be taken around the block frequently. Poor Jay was out at 9pm, 10.30pm, 1.30am, 2.30am and 5am on top of the frequent trips around the block during the day.


The crying went on through most of Thursday, just a little whimper constantly. It was clear looking at him that he still wasn’t fully out of the G.A. His eyes were like saucers. I was very relieved when his natural treat box arrived and he was very interested in it. The chewing broke up the crying.


 He had a huge hairy cows ear to chomp on and that cheered him up.
He was so sad and pitiful it was heartbreaking that we couldn’t comfort him. The first time he was really happy and started looking more like himself was when he had a present delivered from his Auntie Beverley. She had sent our beautiful boy a Turtle toy. He wagged his tail like mad and was so happy he paraded it around the bedroom!


That was the first time we saw a glimmer of the Dembe we know and love since he had come home from the vets. He was still having diarrhoea on Thursday during the day so I had to ring the vets and get him some stuff to soothe his belly. The vets advised us that it might take 24-48 hours to resolve.
Dembe was a lot better Friday still a bit whingey but we had longer spells between cries and he spent an awful lot of time sleeping.


As you can see from the photos his eyes are totally different and he is fully present.
By Saturday he was completely back to normal!


Yesterday (5th October) our vet rang us to give us the details of the report the Ortho Specialist had written. The specialist concurred with our vet, that Dembe does have bilateral Elbow Dysplasia. We were given 3 options 1) CT scan to provide  more detailed images and then from what they show form a plan, this would involve another general anaesthetic, 2) Open up both elbow joints – arthroscopy have a look inside with a camera and see what is going on, obviously this involves another general anaesthetic, 3) manage conservatively with hydrotherapy & Physiotherapy using pain relief when needed. Mr Myasthenia Kid and I had already discussed this at length before we saw how Dembe recovered from anaesthesia and had decided on avoiding surgery if both vets concurred that the joint is showing subtle changes, which they did.


The vet talked me through the things that we can do at home, so any slippery floors need to be covered up as much as possible with rugs. Well all our downstairs rooms are laminate flooring, I had already ordered some runners to cover large sections of the floor to stop him slipping. Upstairs the bathroom and Mr Myasthenia Kids bedroom are also laminate flooring, so I will need to get a small rug for the doorway in Jays room. The bathroom already has bath mats down. So we were ahead of the vet with actions we could take, as we were with the next few suggestions.


The vet told us to start him on joint supplements, we started him on Golden Paste last week. I made up a batch for him and he is really enjoying it. I have also got coming some green lipped muscle extract and some salmon oil. Both highly rated as supplements for dogs with joint problems. I just hope I can get him to take them! He is such a fussy animal.


We also need to get his weight down to the skinnier side of normal as this will put less strain on his legs. So we are actively trying to get his weight down, going on how he looks rather than weighing him at the vets.


Exercise, he can no longer have professional dog walks. He can no longer walk for longer than 25 minutes at a time, during that time he can’t chase after a ball or play with other dogs both activities he loves because we can’t risk a fracture of the elbow or making his joints worse. I am so sad for him, I can’t lie I hid in the bathroom last night for a bit and just cried and cried.


Dembe has been referred for Hydrotherapy so we are awaiting the physiotherapist to get in contact with us. This will be used to strengthen the muscles around his joints and protect them in the long term.
So last week was very full on with all the stress surrounding Dembe and what they would find in the X-rays. Dembe has been very clingy since he was in the vets for the day. But he is walking much better and is no longer as stiff as he was getting up from a lying position, that makes us happier with the decision we have made regarding conservative management.